Update: September, 2015 My sister has completed Adriamycin Cytoxan and has just moved to Taxol for Stage 3 Breast Cancer – here are some links I wrote about her experiences with A/C Chemo. My own experience is below:
https://denise4health.wordpress.com/2015/07/22/lifetime-dosage-adriamycin-cytoxan-ac-chemo/
A friend sent me a Facebook message that she had not heard me whining about chemo in awhile and hoped that meant I was doing better. Well, at first I found it difficult to believe she had said that, then, in her defense, I realized it does sound like whining to those who have never been through Chemotherapy. But I am utterly and totally convinced that it is not possible to complete Chemotherapy without complaint. But first I had to look up the definition of “whining” which is “to complain or protest in a childish fashion.” I think we need a different word besides whining. If torture is being inflicted on a POW, if they cry out in pain, do you call it whining? If a hostage is injected with poisons and they complain as they don’t know if they will live or die, do you call it whining. I think not. The pink ribbons have really lessened the battle that goes on by Breast Cancer patients. Pink denotes a comfortable warm and fuzzy feeling, and a ribbon is such a nice thing that you wrap on presents. How can there possibly be a battle to fight with all that pink? The funny thing is, Adriamycin Cytoxan is a pinkish red. Maybe that is how they came up with the pink campaign. This drug is extremely toxic.
My Chemo Nurse told me they do not call it “red death” and “red devil” for nothing. It can only be administered by hand into a vein, most often through a port, not an artery. It can cause permanent heart damage, not to mention many serious side effects. It is used to treat many forms of cancer, but can only be administered by a specially trained Chemotherapy Nurse in cap, gown and gloves by injection. My dosage was four HUGE tubes each time. It is so toxic you can only have it for so many rounds once in a lifetime. And they warn you to flush your toilet not once, but twice or three times with the lid down and to wash your hands for 45 seconds during and after infusion.
But right now, it is the best weapon against Breast Cancer, it so often does its job, and we have to tolerate it until something better comes along! For that I am grateful. ____________________________________________________ …. please check out my cute chemo caps at www.hellocourage.com my online store I started to help pay my medical bills and help other cancer patients find unique items to help them feel better. All extremely high quality at affordable prices… I’ve searched high and low to do the work for you, so you do not have to do so! Click on hats!
We all know a few over-achiever chemotherapy patients who continued to work full time, go to school for their PhD, travel to Europe, run 5Ks, take care of 8 kids, and write a novel while undergoing chemotherapy. They ruin it for the rest of us who are trying to just make it day to day. But in my case, I am through with Adriamycin Cytoxan which was administered “dose dense” which means every 2 weeks. I am grateful that I was able to receive the drug and thankful for all the cancer cells it killed in my body. I have Taxol to contend with for 12 weeks, but for now I am saying goodbye to the following side effects from Adriamycin Cytoxan.
These are MY experiences. Some people breeze through AC with little or no side effects, and some people have more! Often the younger you are, the better you make it through. Certainly, there are exceptions to this. My experience: Losing my hair strand by strand, losing my feminity and the ability to feel pretty, dark circles and thinning skin under my eyes, skin that has aged, not sleeping, debilitating mouth sores, horrific and constant nausea, inability to think of any food or watch food commercials on television, inability to move off the couch for a week at a time or more, neuropathy in hands and feet, bleeding hemorrhoids, metal taste in my mouth, extreme and debilitating fatigue, Chemo brain and mental confusion, severe bone and muscle pain, weakness in knees, low blood counts which necessitate having to be a prisoner in your own home, necessity to take steroids and not lose any weight even though you can’t eat, bloody noses, helplessness, loss of independence, severe heart palpitations, frequent urination 5 or 6 times during the night, severe hot flashes every 15 minutes, increased menopausal or chemopausal symptoms, being severely out of breath because of low red blood cells, inability to even walk to the mail box, depression, chronic cough and mucusitis, horrific heartburn, blurry vision, twitching eyes, inability to wear contact lenses, inability to do simple tasks, inability to work and loss of income, loss of identity, inability to care for others, and the list goes on. (Update: 6 months later I learned I had a heart attack during Adriamycin…I remember the night well, but thought it was side effects. If you have ANYTHING that mimics heart symptoms, get to the hospital NOW!)
The effects of chemotherapy last over 2 years in your body once you are through it. So think before you ever accuse a Cancer Patient of whining. Please do not say that word to them. If you are awaiting Adriamycin Cytoxan, you will get through it. There is light at the end of the tunnel. It will get better. Live one day at a time or one hour at a time is even better. And don’t listen to those who tell you to “stay positive” in the midst of it. Some days you just cannot “feel” positive. Put yourself first. You will be a heroine when you are done. You do not have to be heroic now.
And if you have been through Adriamycin Cytoxan, you know exactly what I mean. No other words need to be spoken. It is in the past, but it will never be forgotten. Here are a couple of posts with more A/C Chemo information: http/denise4health.wordpress.com/2012/08/20/fears-about-adriamycin-cytoxan-ac-chemo/ and https://denise4health.wordpress.com/2012/12/19/do-not-quit-chemotherapy-even-if-you-want-to-and-other-chemo-info/
Update: My only sibling, my sister, is going through AC Chemo for Stage 3 Breast Cancer in June, 2015. It is so hard to watch her go through this. I am now 3 years out, but the memories are still there watching her. Time helps fade the memories, but I have them so I can help her now.
denise4health.wordpress.com 
OMG Denise, you have every right to complain. I agree, how can those people be so strong on chemo? They make me look bad. Never mind, I will just try to be a better me… when I can.
So glad I found this site! I started A/C one month ago and it has kicked me down! Denise I’ve had every side effect you whined about. This drug is so toxic and it’s scary. I have 3 friends who are breast cancer survivors but none of them were on this drug, they can’t believe how bad the side effects are. I’m wondering does the heart palpitations and the out of breath go away once you stop chemo? I still have mouth sores a month later. I get round 2 tomorrow (had to wait a month before this second does because I was so sick and got shingles). Looking for answers and support. Thanks.
This has been so helpful to me. My sister has actually just finished her a/c treatment and is worried about the palpitations and shortness of breath also (sorry, I don’t know when it goes away, but God willing, it will). She is actually seeing a cardiologist. I am relieved to know that it seems to be a common symptom.
Glad your sister is seeing a Cardiologist. Although it can be a common symptom,
often the heart issues are overlooked. If she would need any heart meds, please
tell her not to be afraid of them. I was and I didn’t need to be. But hopefully,
it will go away quickly for her. Denise
I too was on this drug. I was also 4 months pregnant and my fiancée said he has never seen anyone sleep as much as i did. It was awful it was a blur to be honest. It happens ao quickly from finding out you have cancer to surgery chemo radiation. There is light at the end of the tunnel. The neurothopy seems to stick around your energy seems to creep back slowly. Things will get better!
Oh, Kelsey, you are always the woman I think about – those who are pregnant going into treatment.
Did you deliver a healthy baby? I met a woman at the chemo ward who had a healthy baby. My heart
goes out to those of you who had to go through such a grueling time during what should have been
such a happy time….thanks for posting!
Wow – don’t feel bad – everyone’s journey is different xxx I’m on my second dose now – I feel great! My first dose was worst – I don’t know how my third will go… I am grateful I haven’t suffered I don’t think any less of others who are – I feel immense compassion xxx
Well, my dear, I think you’ve explained yourself more than adequately, and you, indeed, have every right to “whine,” if that is, in fact, what you were doing. But do it! Whine! Complain! Scream! Moan! I just finished a survey of the research literature and found that self-expression–of anger, sadness, hostility, what have you–actually predicts better response to treatment (see the post at http://wp.me/p22afJ-Ch if you’d like the sources) than ‘stuffing it’ does. So, no matter what people call it, just go ahead and get your feelings out. It’s one of the simplest ways to aid in your recovery. Wishing you the best in health, Candida
Thank you so much! Your article was very timely as I learn to deal with my anger and cancer!
I have just completed my first dance with the Red Devil. Because of my age (70), and my healthy heart, my oncologist wanted to keep it that way, so he has spaced my sessions to 21 days between cycles. I had my first last Monday. I was extremely anxious and remember pacing the waiting room like a caged lion. I was afraid that first puncture in my port would hurt – I was wearing the lidocaine cream and they froze me anyway. No problem. I didn’t get the massive dose of Adriamycin with the Cytoxin – but out came a damn bug large animal syringe of it for the push.
I was sleepy in the car going home. I had taken the Emend during chemo, and since my crazy/wonderful doctor told me he was the “No Puke” Doctor, (no pain, either), there was almost no nausea (had 3 prescriptions and detailed instructions); no diarrhea, just a little fatigue, and lost 9 pounds in a week. When I went to see my surgeon to be discharged, he was amazed that I was smiling during the first week of chemo. I was able to cook, take care of my husband who is a heart patient and the stress is overwhelming him, walk the dogs, take care of the birds (but not for 72 hours while I outgassed), and be the chicken wrangler. I drove for the first time Friday, just up the road to the little grocery and feed store. I maybe shouldn’t have. It didn’t feel “right”.
Last night I wanted to try no anti-nausea meds, and at 2 a.m. felt a little queasy, so I got up and read a little while and it left. However, I’d had some pistachio nuts before I went to bed.
My husband worries about me not getting “enough” of the Adriamycin. He has a medical background and cannot believe I am going through this strong and with humor. I will not whine; I did my crying and limited it to 15 min./day in private after diagnosis. I had a lumpectomy. The damn drain got infected and the fluid took 3 weeks to finally stop. Now I have a wisdom tooth that needs extraction. I’m going to tell my oncologist about it Tuesday because of the holiday.
I’m back blogging; want to finish up an almost-novella length story; if it ever stops raining, I will be out with my camera.
Meanwhile – how about a big bowl of sausage and ziti? I use a cheat method, and not even my Grandma would know!
I’m so glad I found you!
May Lattanzio
I don’t see it as whining at all. Chemo is no walk in the park. I admire your courage to go through taking “the red devil” as I have heard it called.
God bless you dear.
Aha! Second chemo was nearly 3 weeks ago and I am tired, tired, tired. The nurse administered the A push too fast, and I felt a little strange upon getting up and going home.
I have had great days (a few), but mostly, I’ve just been tired. Have had a couple of strange pains, notice my abdomen enlarged, some heartburn. I am taking digoxin in a very low dose to protect my heart. No pain, no flutters. But I have noticed my pulse is a bit rapid – it’s usually 60bpm. I have not lost my appetite. My friend down the street was misdiagnosed with leukemia years ago and went to 54 lbs. I haven’t lost anything to celebrate about!
The sweats! OMG! I feel like my head is a rainbird. They start at my scalp and soak my clothes, then I hit the air conditioning and I’m cold. My dr. said take 2 ibuprofen and it would help. I laughed. Then I didn’t. He was right. (no more than 6 in 24 hours though).
I’m going to drag my tired self up to the highway and do some shopping. Either that or we starve. My husband is down with either a kidney stone or a back problem and won’t go to a dr. or a chiropractor.
Did you take Neulasta? I get minor pain from that, mostly in my hips.
I went to bed for a solid day when Obamacare was going to be passed. We are on the edge of what we can afford for insurance. I told my husband that I might have to make a life/death decision just because of horrendous bills (we have a supplemental policy), and copays. But the insurance payments are very, very high. If they go much higher, and I expect they will,
I may have to make “the” decision.
That’s scary.
I’m not afraid of fighting cancer. I’m afraid, quite frankly, of what Obamacare has in store for me and for all of us.
I’m sorry if I offended anyone about my comment on “whining”. Poor choice of words.
Be strong, be brave, be beautiful and we’ll all win.
May
May, thanks for sharing your experiences so they can help others!
Yes, Neulasta does give a lot of bone pain. Some people just get
it in certain joints like hips, and others get it all over. Mine
was mostly in the long bones of my legs – like growing pains when
you were a child only worse.
It is all frightening when you have high medical premiums and we
do not know what to expect. I pay exhorbitant monthly premiums plus
a huge deductible. Cancer is expensive and has cost me a lot of money
and continues to do so. Please check back and let us know how you are doing!
Hi May,
I am very sorry to hear how tough things have been for you and hope that since you posted things have improved. I can’t imagine how hard it must be to go through chemo when caring for your husband and having to worry about the cost of treatment.
I am 38 single mum of two, living in Australia. Four weeks ago I was diagnosed with grade three triple negative idc with metastasis in nodes. I start dose dense AC on Friday. .I am really scared! But I thank God every day that I live in a country with ‘socialised’ health care. To date I have visited surgeon, one of my countries top oncologists, had my biopsies, CT scans, bone scan, heart tests etc..cost to me to date… $100. Under Australia s pharmaceutical benefits scheme I can’t be charged more than $36.90 per dose for my chemo, hospital visits for the infusions are completely free..that also includes my neulasta.
I don’t know how Obamacare will work as compared to our system.but our experience, and that of most other western countries is that government involvement in health care has been a huge positive for ordinary people.
There is a downside…I will have to go on a waiting list to get my reconstruction done..this is currently about eight months..but again will cost $0.00…
Anyway my biggest worry is beating this cancer and being here to rsise my children. I will be praying for you (and myself)
Kate x
I will be getting my 4th, and final, dose of adriamycin this week. So far the side effects have been manageable. While the dizzy and nauseated bit is no fun, I’ve not had much in the way of pain. Perhaps the fact that I’ve been a CFIDS and fibromyalgia patient for the past 30 years is part of that — the aches from the chemo are actually less than some of the pain related to the fibro, and the drugs I take for that could well be mitigating the chemo and neulasta side-effects. Once I’m through round 4 of the AC leg, I have 4 rounds of paclitaxel and then 28 rounds of radiation to “look forward to”. So this year is all about the cancer — but if it works it will be worth it. The double-mastectomy and DIEP flap was no joy either. An infection in the transplanted tissue was horribly painful and landed me in the hospital for a week after round 1 of chemo and delayed round 2 by three weeks — so the dose dense regimen got messed up. I am not looking forward to Paclitaxel as I still have neuropathy in my right hand from the surgery.
Glad I found your blog — and you’re right “whining” is not the appropriate word for it. Justified bitching maybe…. but what we get put through in this is wholly unpleasant and we do it with the Sword of Damocles hanging over our heads the entire time. I’d say we’re entitled to the occasional bitch-fest when we feel like something the cat dragged in, batted about, dragged back out, recaptured and dragged back in again and then repeated the cycle a couple of dozen more times. My response to “how are you” is generally “hanging in there”…. but if one more person tells me how “tough” I am…. I may have to slap them.
I am going to be dancing with the red devil two weeks from today. This was a little scary to read, but at least I know what to expect. Thank you for your candid post and best of luck to you!
Amy, it is scary to read, and I am so sorry you have to go through the Red Devil.
If it is any consolation, a few months out from it you do start to forget! And some women
breeze right through it! One thing, we will all get our lifetime doses in so we don’t have
to worry about repeating that again! Thoughts and prayers are with you! Denise
I went through Adriamycin-Cytoxin for breast cancer two years ago, and yes, it felt as if I was dying for the 8 weeks of treatment I survived. The only advice I can give is expect the worst and maybe it won’t happen, but at least you’re prepared. It also helps to be under the care of an oncologist you trust and a supportive chemo staff who takes you seriously and makes you feel like you aren’t alone. Don’t be afraid to ask for help from your family and friends and “whine” as much as you need to get that help, especially if it makes you feel better.
Jane, thanks so much for your wise advice to others!
I just had my third AC treatment a couple days ago. I’m on the every 3 weeks schedule. I came across your blog while searching for info to decide as to whether I will even do the Taxol that’s supposed to come after this. In these tough days after the AC, I cannot even imagine doing more chemo. I just don’t want to do anymore. Isn’t the tamoxifen supposed to be the most effective part anyway (besides the surgery of course…)? ugh. It’s so awful that any of us end up in this position. I hope you are doing well post-chemo!
Hi Jill, I am going to send you an email to your email address…Denise
Hi Jill. It is July 20, 2015 and I am about to face Taxol treatments. I have one more AC to do and have got through it relatively unscathed. I am terrified of permanent neuropathy. DId you do the Taxol and what side effects have you gotten? If there is anyone else who has gone Taxol chemo, could you relate your experiences as well?
I did 12 rounds of taxol and am about to get red devil. I didnt feel great during taxol treatment for breast cancer but will not complain, much. It sucks. It will save your life so sucking is minimal compared to dying.
Hope you are making it through with the red devil! Sending my best!
Denise, I absolutely love every word you have said! I am currently under Adriamycin-Cytoxin & Taxotere for my triple negative breast cancer. It sucks!! I have my treatments every 3 weeks. I am fortunate enough to be able to go back to work after being “down” for 7-8 days. I have just about all the side effects as you + retaining fluid & non stop watering eyes because of the Taxotere. I moan, groan, bitch, complain the entire week & then some…. I do have a positive out-look however. I did not cause this & couldn’t prevent it either. My motto: It is what it is! I will get through this no matter what. I have 2 more treatments left & then will have a double mastectomy with reconstruction after. I’m hoping for no radiation; I’ve had enough. I just want to be able to taste food again!!!! God bless you. You actually have made my day. I saw my oncologist today & he told me my cancer has a very high rate of recurrance elsewhere. Needless to say I’ve been pretty down the rest of the day. I don’t think I can go through this again, but after reading what you wrote, I am dtermined to fight this & try to stay as positive as possible!..Thank you for what you have written. It means a lot to us all going through this nightmare.
Hi Lynn, thanks for writing me and for your encouragement! You are in the WORST part
right now. It gets better from here – even surgery, although emotional, is a lot better
than chemo! I am glad my words have helped you!
Don’t listen to those doctors and recurrence. They love to tell you all about that,
but I try not to pay attention!
Thinking of you and prayers for you! Denise
I was diagnosed with triple negative breast cancer and after a mastectomy, my chemo was the A-C-T “cocktail.” I was also told that my odds for getting a recurrence were high, but I just passed my 5th anniversary of being cancer-free! We triple negative survivors CAN beat cancer!! Linda
Linda, CONGRATULATIONS! You bring all of us hope! That A-C-T cocktail is bad,
but it does kill cancer! Woo hoo! Thanks for letting us know!
I had a double mastectomy on 04/05/2013 with the triple negative diagnosis. The medical oncologist said after reading my labs, age 66 and medical history, diabetes and HBP, he did not recommend my taking Chemo. I was devastated. He said after meeting with me, he would agree to my going thru the A&C chemo, 1x every two weeks for 8 weeks and then going on another chemo 1x a week for 12 weeks. I have had a hard time healing part of my incision and am on a wound vac now for 4 weeks. I am afraid this cancer is growing wild throughout my body while I am not getting the chemo. However, after reading these terrible side effects, I dont know if I am strong enough to take it. I thought it would be hard, but had no idea.
Irene – just remember, everyone is different. I have met many women going through AC –
some as old as 85. Many of them had other severe health issues, but they made it through.
I always marvelled at them. The other thing about side effects, is that they come and go.
Plus, Taxol is usually far easier than AC. You just have to make it through AC – but it
does its job. It kills cancer. Would I go through it all again just to know I killed cancer?
YES. Almost all women I talked with would do the same. And remember, you can always get a
second opinion which is always a good idea. Sending a hug your way! Denise
This is very encouraging to hear! I have triple negative breast cancer. I did my surgery first and am now doing my 11th treatment of Taxol. Then I start the Cytoxan. I’m fretting a little about it and am hoping and praying I make it through pretty good like some of you have. My doctor hasn’t told me I have a high recurrence rate. So is this something he is keeping from me?
hi my name is Ann from Ireland. I too have had triple neg with double mas et . I would have faith in your consultants they are amazing wonderful human beings who are seeing our problems every second of the day and if my team are anything to go by they will be with you 150% of the way as we girls are too if only in kindred spirit ways. keep strong my friend all will be well here for you if you need someone to let off steam or share your worries you never know I may need you more god bless you x
Believe it or not, I AM actually looking forward to the surgery. If I can go through chemo, I can get through the pain of surgery. I’ve already had port surgeries; 4 within 6 days. It is hard not to think about the recurrence. I have tried to look some stats up on line. It looks like there is about 60% survival rate. I guess that’s good, I just want better after going through all of this! (am I greedy?) Did you find the longer you had chemo the worse/longer if affected you? It seems to hit me earlier, harder & longer after my fourth treatment.
Thank you for your thoughts & prayer. Likewise from me to you, Lynn
Oh so true, if you can get through chemo you can get through anything, Lynn!
Yes, the chemo is cumulative so it does get worse the longer you go!
You are strong, you will make it, you are doing a great job! Denise
Thank You Denise!! I just did another search (because I need all the info I can get) of A/C side effects and your article popped up. My time with this begins on the 30th. Just 4 more days! Nervous but ready to get on with treatment. Each day is one step closer to the goal of being a cancer free survivor, so whatever it takes to get there I’ll do!
Hi Sara, I wish you well with thoughts and prayers on your A/C journey.
It is a scarey day…the first one is the worst because you don’t know what
to expect. Then going to chemo gets better and easier. You meet many inspiring
people along the way. I can tell by the way you write that you are ready to
fight the fight and you will be a long-time survivor!!!
Whining about chemo? Come on now. I made a recent aquaintance who has cancer and for a short time I thought she might be staying with me while undergoing a clinical trial at M.D. Anderson here in Houston. She was ultimately denied the trial, but in preparation for her possibly staying with me I bought a book called Help Me Live: 20 Things People with Cancer Want You to Know. It was a good book. I would recommend it to loved ones of people with cancer. One main theme? It’s not about you. It’s about the person with cancer. In reference to the last comment, from Sara, my sister also starts AC chemo tomorrow, the 30th, (4 treatments spaced two weeks apart) and then paclitaxel every week for 12 weeks. I’ve been doing research on the drugs she will be receiving, because I plan on shaving my head when she starts to lose her hair. I’ve actually been trying to decide between shaving my head before she starts to lose her hair to maybe lessen her nervousness over losing it or waiting until she starts to lose it. I had read that some drugs just thin the hair and not cause complete loss so I was thinking I’d wait until she started to lose her hair to see what would happen. From what I’ve recently read adriamycin will cause complete hair loss. No doubt. So, I have a question. Do you think I should shave my head now or wait until my sister starts to lose her hair? As someone who’s gone throught the type of chemo she will go through what do you think?
Hi Kelly! What a great sister you are!! What an act of love and caring! Plus
helping your friend! You are amazing! Thanks for the book recommendation. I will
check it out.
As for shaving your head…I would have felt more supported if someone had done it
simultaneously with my shaving my head. If you are really serious about this, and it
DEFINTELY sounds like you are, getting your hair cut really short before the “fall out”
starts is REALLY hard. That was harder on me than the shaving of the head. So
I would think if you do it together it would be much easier on your sister!
I know your sister will do great because she has such a wonderful support system through you!
My best, Denise
Kelly,
I had cancer/Adriamycin four years ago. My hair has finally grown back (a beautiful gray!) and I have been declared cancer-free. My sister came and spent a week with me before I started chemo, and we tried on wigs together. Never laughed so hard in all my life!!! Since you’re planning on shaving your head, why not go do it together before hers starts to fall out. I found it to be less depressing not to have to watch it fall out. My thoughts and prayers will be with you and sister as you face this journey together. She is very blessed to have you!
Robbie
Thanks, Denise! I exchanged some messages with my sister today (well, now yesterday) and she said she will cut a ponytail to donate and then use the clippers when the first clump falls out. So, I’m going to wait until she clips her hair to clip mine. We don’t live in the same city so it’s also a way to bond through the treatments. I did fly out for her double mastectomy (on her birthday, no less) and stayed for two weeks. Her first treatment went well. One down and 15 to go!
What a great sister! So glad her first treatment went well!
I start treatment Monday. Thank you so much for the honest description! I will absolutely prepare for the worst. My one main question is how long in between treatments does this terrible feeling last? I will get treatments every two weeks. Will I feel somewhat normal by the second week? Thanks!!
Hi Shanna, I will be thinking of you on Monday! Yes, you will be feeling somewhat normal
by the second week. Allow one week to feel crappy. The first treatment you may not feel
bad at all since it is cumulative. Whatever you do, know that you can do it and make it through.
I just got an email from a woman who wrote me because she wanted to quit chemo. But she did not.
And her most recent PET scan showed her cancer free! That is the end result to keep in mind!!
HI Denise, i have not started the red devil yet,and i am having reservations. is there another drug? do you have to have a porta cath? i have great veins and really do not want the port if not necessary. thank you for your reply,
cheryl brown
Hi Cheryl, I sent you an email…I believe ports are necessary. I didn’t want one,
but was so happy to have one. Denise
Hi Denise,
Thank you for your honesty. I am going thru the Red devil right now. My treatments are every two weeks. I have two more treatments and then on to the last of the Chemo for four weeks, followed by raidation for six weeks. The worst thing, I think is the shot the following day called Neulasta. That shot makes me have the worst headaches and joint pain. I sleep for two days.
I found the lump my self and had always had yearly Mammograms. I was digonased with stage 3a breast cancer and had a double mascestomy
Hi Dee Ann, oh so glad you are making it through A/C Chemo! Good for you!
Yes, that Neulasta can really give the joint and bone pain! I took quite a
bit of Motrin through that, but I never got the headaches. I am sorry you have
to deal with that on top of everything else.
I hear about so many woman who are Stage 3 and had yearly mammograms. Quite
scarey. If I can be of any further help, please feel free to contact me at
b4Denise@hotmail.com My best, Denise
Nurses at my treatment center recommended Claratin the day before and three days after the Neulasta shot to help the aches. Just the regular Claratin. I haven’t had any aches.
I also was Stage 3b with yearly mammograms. I had lobular which is apparently harder to detect – even with ultra sound and biopsy the Drs thought it was two cancers near-by but after the mastectomy it was found to be one large cancer (6.5 cm) and a separate cancer in the other breast.
Finished A/C and just had my first Taxol yesterday — so glad it was MUCH easier than the A/C! I was really getting concerned about how hard my heart would beat after A/C. Am glad to see it wasn’t just me. Thank you!
I went through the taxol with no problem. I had to have an echocardiogram after to see if my heart could take the high doses of herceptin. I am 3c/ herceptin triple positive. I had 2 cancers in one breast. I just wanted to tell you that you might feel some pain AFTER you stop to taxol. No one warned me of this and I had no idea why my joints were hurting so bad. The doctor then told me it was the taxol working its way out of my body. It sure felt better going in than coming out. I just had day 7 of 33 radiation treatments. All is going well. Is hard to go through this but we can make it and be better for it. I REALLY believe that too! God be with you all and I’ll be praying for you all!
Sheila
To the lady wondering about ports. If I could give only one piece of advice to someone starting chemo-it’s referred to as FEC-T where I live but recognise the Red Devil!-it would be don’t let them inject directly into a vein. It’s painful, and I mean PAINFUL, but it can permanently damage the veins. I had first dose this way and still have problems. Also very possible you’d get through a few doses then need it for lack of suitable veins. Just go for it at the start! One less thing to suffer!
Lol I wish I had done that – but I’m half way through now… my arm is black and blue! Lol
Denise McCroskey – your blog is a godsend. I am having round #3 tomorrow, and your blogs are both informative and gives hope. I am sending you lots of love, thank you for what you are doing. p.s. (Hopefully tomorrow won’t be awful.)
Hi Carol – oh good #3 – downhill from here! Almost done, Carol, with the worst of it. Hang in there.
You can make it even if you don’t feel like it!! I am so thankful I have been
able to give you some hope! I appreciate your kind comments! Love and hope your way, Denise
Yep agree it’s 2017 and your blog is still helping! Xxx bless you!
I will start the a/c chemo next week for 4 treatments every 3 wks then Taxol every week for 12 weeks then radiation. Does your hair start growing back while on the Taxol or after you have completed the treatments? I had a double masectomy on 8/29 with reconstruction on one breast due to the radiation. I want to try to continue to work but not sure I will be able to after reading all the reviews. It helps knowing you all did survive the treatments. How bad are the Taxol treatments?
Hi Sheryl, I am going to send you an email to answer your questions!
Wishing you the best during treatments. Denise
My hair started growing back as soon as I finished AC and during Taxol.
Hi Denise, Your blog is informative. My Mother is going through A-C-T now. She has done 3 AC. Has her 4th one this Friday…then will start the Taxol. She has treatment every 2 weeks. She is really having a hard time right now. She was feeling pretty good so she went to the grocery store a few days sgo, well…she collapsed at the check-out counter. Oncologist nurse said her blood sugar probably dropped. Her mouth and another area are very sore now. She has been having hot flashes since she started the AC 6 weeks ago. I moved her here with me before she started treatments…so I could help her through this mess. I just don’t know how to help sometimes. I encourage her to get out and walk around…but I see that she is weak and a bit unstable on her feet. She is so tired. I cook soup for her as it seems she can eat soup when nothing else is good to her…..and right now most food is rough or hard to swallow. Please keep posting so us caretakers will know how to help. Thanks Janie
Hi just came across your site. What a help. I am gettin ready for my 4th and final treatment before the taxol. You really answered some questions even my nurse and dr would not say much about. The shortness of breath does not stop, just to know this is normal helps greatly. It is what stops me from doing things. People talk about the tiredness, I am not tired but I have little strength and my arms and legs feel like lead so that stops me from things. The palpatations are not pleasant but manageable. I am also feeling worse as it goes along so that also help me to know it is normal. Thank you again for helping us novices.
Hi Diana, congratulations on almost being through A/C Chemo!! I am so grateful I
could help you and answer some questions! It makes me feel like what I went through
was not in vain! No one really tells you about the shortness of breath, and it is
very scarey!
The good news is that after you end the A/C, it will start getting better after a few
weeks. And Taxol has its own troubles, but not nearly as bad as A/C. Most women who
had a difficult time during A/C, have much better time with Taxol and vice versa.
If I can ever answer any questions, just email me at b4Denise@hotmail.com
could the shortness of breath have been actually due to your undiagnosed heart attack, Denise?
Yes, absolutely, some of it probably was. However, some shortness of
breath is common with AC because of the red blood cells – that’s why I
didn’t pay more attention!! I like to warn women if the shortness
of breath seems extreme, call your Oncologist and get to a hospital!
Thanks so much for the question! Denise
I start this fine combination cocktail on Tuesday- Thanks for your words of encouragement.
Whining, I think not. Try it anybody. It’s very tough.
Hi Everyone,
I have NEVER posted on a blog but felt compelled to do so after reading so many of your stories. I am a 46 year old married mother of 3. I was extremely active and have always been excited by life! My whole story changed on 9/18/12 when I was told that I had stage III breast cancer. Invasive Ductile Carcimona. My husband broke down first, I followed in a couple of days. I will have my 4th and last A/C treatment on tomorrow. I will require surgery, 4 more rounds of “light chemo”, radiation, then 5 years of oral medication. My side effects haven’t been as bad as some yours. I have the heart palpatations (they just started), no taste buds, and the EXTREME fatigue, but GOD knows I realize it could be worse. I am blessed with the most awesome & supportive husband in the world and believe that NO ONE should have to go through this alone. I hope that I am able to hold someone’s hand, bring them a meal, run a errand or just be there for someone. So if you just happen to read this and you know someone going through this reach out to them… THIS IS HORRIBLE!! I think the word WHINE is so insensitive and cruel. This disease is devastating!! Keep fighting!! Stay Strong!!
Hi Denise
I came across your blog looking up chemo with dry eyes. I just finished my last round of AC last week and in 2 weeks I start taxol and her emptiness as I am triple positive. I try not to bitch and whine but when my boyfriend asks me how I am and I say ok, he gets mad. He wants details! He is such a sweet man! So thankful for him!!!
Regards,
Denise 🙂
Great name by the way 😉
Hi Denise, thanks for writing to me. I am so glad you are done with A/C chemo. That is wonderful news!
Taxol will be better…it is for 95% of women I hear from, so with those odds, I think it will be for you too!
I am glad you have such a wonderful and supportive boyfriend! You need people who love you and support you to
get through this. You are doing great!! My best, Denise
Denise ~
I am currently undergoing chemo for Inflammatory Breast cancer; yeah, that bad one. I’ve been in a Clinical Trial and have completed 12 Abraxane/Avastin and just completed my 3rd of 6 A/C.
I know the standard of care is 4 A/C and I’m quite certain I cannot complete the 6. Every side effect you’ve described and more have hit me. I’m most afraid now of the long term damage the 6 A/C will have. In your experience communicating with other women undergoing A/C, have you known of any other women who have done 6 cycles?
Thank you for putting everything in such TRUE form.
Debbi
Debbi, I will send you a separate email, but I have not heard of any other women doing more
than 4 A/C treatments.
Ladies, I was dx with Triple Negative BC in 2004 and did my cycles with ACT. It was a bitch, but I am CANCER FREE! Hang in there.
Elizabeth, thanks for posting. Congratulations!! You will bring hope
to many!! THANK YOU!!! Denise
I am going to have my 4th and last A/C chemo next wednesday. It has been a bad chemo but I will make it through it. This week is the week I lost all my hair but thats ok it will grow back. Those that are or have to take this chemo I can just say hang in there it will get better and keep fighting it will be a light at the end of the tunnel.
Hi Connie, somehow it seems A/C #3 is the worst. #4 seems to be better for most – probably because we all know
it is DONE!! Thanks for your encouraging words to others in the midst of your own storm. I know you will do
well. My best, Denise
Beautiful post. So VERY happy to read that you are doing well. Thank you for your candor.
Hi Denise ~
My update….. I decided to do the 6 A/C treatments and hope it does everything in its dreadful power to kill my Inflammatory Breast Cancer before my surgery January 25th.
This has been the most grueling experience of my life….. But my life is what I want to keep, so I kept going. Happily my final treatment is December 31st! Way to say goodbye to 2012!!!!
Thank you Denise for being there and Happy Holidays to you and yours ~
Debbi
Debbi – WOW, 6 A/C chemos! Never heard of anybody doing that so you are all of our heroine!!
I am so proud of you!! I speak on behalf of the women of my BLOG – YOU ARE AMAZING!! And almost
done!!! I also sent you an email. My best, Denise
Loved the honesty and to the point comments in your blog. I am a 41 yr old single parent diagnosed with Stage 3b IDC HER2+ breast cancer on Oct. 3rd, 2012. I had a bi-lateral mastectomy on Nov.6th, 2012, a port placement with blood clot complications, on Nov. 20th, and am currently on my second out of 6 rounds of A/C chemotherapy/legalized torture and am having a rough time. I have discovered 2 new tumors on my breast plate and will be biopsied on Dec. 27th. Although I am very grateful to live in a country where such treatment is accessible and we have capable nurses and doctors, I think sometimes what did I do to get this and ask myself if God hates me and if i am a bad person. I know that I am not alone when I say there are up days and down days dealing with this horrible disease, and that I feel nobody close to me knows exactly how I feel and how terrified I am. I find I have to force myself to be patient with others, and know in my heart that this will pass and I will be a better, stronger human/woman for this, but right now this just plain sucks. Thanks for listening to me!
Candice Eldridge
Candice, I am so very sorry you are going through this. Your emotions are real, your feelings are real,
and the hardest part is nobody can “get it” unless you have been through it. I love the description of
“A/C chemotherapy/legalized torture”. It is so true.
I am sending you a separate email…I want to pass some encouragement on to you. Denise
I cried when I read this. You are not alone cause I was diagnosed like you on October 10th I was 3c and had the double mastectomy. They then found 2 more spots that turned out to be just shadows. I cry because I KNOW just how you feel! I wondered why God had allowed this to happen to me. But we live in a fallen world where it rains on the just and the unjust. I do know that without God I could not have gotten through these 4 red devils. God alone has been my strength when I have chemo brain or just can’t pick my head up. This blog and other survivors bring us strength too but God was with me on those dark and lonely nights. God loves you, He’s not punishing you. We may not have an answer but we do have a loving Father who holds us and loves us when no one else can understand the horror we are going through. Hang in there! We WILL get through this
Sheila
I am having 6 rounds of ACT 12 weeks of Taxol and 12 weeks of radiation for my breast cancer that invaded my lymphnodes. A double mastectomy was done even though I had cancer in just my left breast. Upon exam cancer cells were noted in the left breast as well. I am one who was told by my loved one not to whine that he doesn’t want to hear it. It is lonely over here,but, I am making it through all by myself…..thanks for letting me speak out.
Hi – I am so sorry you have to go through this. It is difficult enough if you
have a lot of support. I am sending you an email. Please email me at
b4Denise@hotmail.com so I can give you some tips on how to make it through.
Denise
Please remember you are NOT alone. There are many of us out here to support you any way we can. Even if it means listening to you “whine”. You deserve to right now. If I can ever be a shoulder for you, please email me at sundip@bellsouth.net. Bless you & Merry Christmas
It absolutely stinks when people around us don’t understand and can’t seem to find compassion – I have begun to realize that my fellow “sufferers” and I have a bond that is closer than sisters and draw great strength from you all – please know that. I am two treatments in to six – That devil is a devil, isn’t it? and just want to pass along encouragement and support – YOU CAN DO THIS!
Lynn, thanks for the encouragement and understanding. Many will benefit
from it! Strength and compassion to you as you make your way through!!
YOU CAN DO IT! Denise
I have finished my chemo. I get a break for 4 weeks then on to radiation for 61/2 weeks, everyday 5 days a week. I have had such an awesome support base from my Lord and savior, family, friends and co-workers. I continued to work full time except for the day of chemo and the day after. It has been a long journey and I can finally see light at the end of the tunnel.
DeAnn, congratulations for finishing chemo. You are a role model for all of us!
You will do well in Radiation I am sure! When you can finally see light in that
very dark tunnel, it is cause for celebration! GREAT JOB! Denise
Hey Alone. You are not alone sweetie. We are here. Those who have been through it and those going through it. How can people be so mean? I think we remind them and scare them of their own immortality. I have people at work making fun of me to my face! They have even said that I don’t belong there with my cancer that I belong at home! I’m not contagious!! I’m scared and fighting a disease and chemo. Then I have to put up with them too? I feel so alone too. My family doesn’t live near and I had just moved to a new town when I was diagnosed. We can and will beat this and ignore those ignorant people around us!
Sheila
I wonder if your partner would be willing to do some counseling with you? My thoughts are that it is quite scary and difficult for a partner to go through this as well…they also have feelings of lack of control and worry about you. Is it possible that he is in denial about this and the more he hears about it the more real it seems? Since I don’t adhere to that way of thinking, it isn’t going to help either or you now or in the long run for your relationship, I wonder if there is help out there that he would willing to participate in. My partner has been a saint, and I wish that for you too—-it makes it so much easier!
I was diagnosed with Stage2 IDC estrogen/progesterone positive. Had a single mastectomy in February with immediate reconstruction (Diep flap). The originally did not think there would be lymph node involvement based on previous imaging, but alas, there was. As a result, I join the ranks of a dose dense ACT regimen. Every other two weeks for AC for four cycles, followed by Taxol on the same schedule. I had my first infusion yesterday. I felt pretty crappy last night, though no vomiting and the drugs certainly helped. Overall weak and feeble with a headache. I was able to eat some, then slept for most of the night. I’m a lot better today, but I wonder if it will still get worse? I’ve heard some say that days 3&4 are the worst ? And, it does seem that my next injection will also be worse if all of this accumulates.
So far I don’t have dry mouth or sores, but I’m assuming that it is way too early for that? When does that all usually happen?
I wish all of you strength and power. We need to focus on the fact that this should get rid of the cancer and allow us many more years to enjoy our lives. I have never asked why me because it’s more like “why not me”—breast cancer is just way too prevalent. Sad, but true. So keep fighting, and keeping eating well and drinking lots of water and do your best.
I am doing A/C now for triple negative Inflammatory Breast Cancer. Had taxol and Cisplastin for 12 weeks and finished in July. Had a mastectomy in October. I am not feeling too well with this Chemo. Tomorrow will be my third treatment, with one more Jan 9th. This past week has been the worst. I am really tired, have lost the hair that just started growing back. I am now losing my eyebrows and eyelashes. I really look sick now. The aches and pains are really bad. I sometimes think maybe it has traveled to my bones or maybe just more side effects. I understand why they call this Chemo Red Devil. It feels to me like the Devil lives in my body.
Marianne, I too had triple negative & went through the Red Devil, Cytoxin & Taxotere. It is hard to go through, but please try to keep an up beat attitude. It truly does help. I have finished my chemo in September, had a double mastectomy with reconstruction in October & just had my “clean up” surgery 2 weeks ago today. If anyone out there needs a recommendation for where to get surgery, please google The Breast Center on St. Charles Ave. in New Orleans. These wonderful people at both the clinic & hospital were fantastic! My surgeon was Dr. Scott Sullivan & I couldn’t have asked for a better person to take care of me!
My hair is finally starting to come back! (including my eyebrows & eyelashes). Do you get a white blood cell booster shot after your chemo? If so, that is where your aches & pains come from. My ribs & back used to hurt terribly from it. As I said earlier, keep a positive attitude. That alone will pull you through. God Bless & Merry Christmas, Lynn
Glad I logged in to this site. Ro.
Thank you for this very realistic explaination of what it’s like. I was diagnosed in October with TNBC. Being married to a lung cancer survivor, I am a much better caregiver than patient and feel like complaining is a sign of weakness and holding back is getting tough. I’ve conquered 3 treatments with 5 to go, even the thought of my future treatments make me sick. I know I can do this, but it’s the hardest thing I’ve ever had to do.
On November 19, 1998 I had my first of 4 AC treatments. I’d had a lumpectomy in October. My AC infusions made me as ill as everyone has already stated but I didn’t get many of the side effects. I had my sister, a barber, shave off my hair when it began to come out in clumps. Going to work was out of the questions as I was nauseated almost all the time and had a terrible case of “chemo brain” which is hard to explain to anyone who hasn’t had it.
After the 4 AC treatments I had a few weeks to recover before starting 6 weeks of radiation. It was amazing the way my appetite came back and it was great to not have everything smell bad. I couldn’t even stand to have a newspaper in the house because it was too stinky!
I was told by my oncologist that as tired as I felt from the chemo, radiation would really cause a montrous fatigue and he was right. I would work until noon, go home and have lunch, nap in the chair til the alarm woke me so I could go to my treatment, then home again to doze in the chair. Incredible.
As hard as all this was to live through I did live through it and I am grateful that being “cut, poisoned and burned” saved my life. I found I was stronger than I would ever had believed about myself.
Stay strong but don’t be afraid to whine. Unless they walk a mile in your shoes no one has the right to tell you how to handle this disease and its treatments. This blog looks like a good place to get some extra support whenever you feel the need. I’m almost 14 years out of treatment and you can be there someday, too.
Karen, it is great to hear from a 14 year survivor! Congratulations! Thanks so much for telling your
story to others to give them hope and encouragement. You gave those things to me as well. Thank you!
It never ceases to amaze me, however, that almost 14 years later you can remember all the details.
We all appreciate the encouragement!! Denise
Denise,
I am so glad I found your site! I went to the Cancer center today to get my PICC line bandage cleaned and changed, signed consent for my BRCA test for my insurance, was waiting for Onc to give me my first appointment, and her nurse comes over quietly and says “Theresa, Dr. Robin said your first treatment is going to be today”! Feeling overwhelmed, stupidly I said “Today, today?” And she smiled and said “Yes”. “Right NOW today”? Shaking her head yes and smiling. I was floored. I thought I was prepared for this but I got very scared all of a sudden. I was put on Dose Dense Adriamycin/Cytoxin for 4 cycles. I get my Neulasta shot tomorrow. It’s wierd, I don’t feel bad, but I don’t feel right. I keep getting flushed, almost everytime I am conversing with someone and I know they can see it. My legs feel like wet noodles and my face feels kinda full. kind of like a sinus thing coming on but without the headache. I am scared to death to see what tomorrow brings but I did take the first pill of the Emend, 1 tomorrow and 1 on day 3. I took a sick day today, not knowing what to expect and am off tomorrow but am scheduled to work on Saturday.
Thank you so much for your blog and please, any advice from such a strong woman as yourself would be greatly appreciated!
Good luck and God Bless!! Theresa
Theresa, I am going to send you an email. Make sure you check your junk folder in case it
goes there. My email address is b4Denise@hotmail.com
Hi Denise,
I am so pleased that my husband found this site! I was diagnosed with triple negative breast cancer on January 2nd. The pet scan two days later showed only a mild trace in one lymph node so we think we caught it in time. My oncologist thinks the lymph node is appearing on the scan because of the trauma from my biopsy. Today I had my echo and EKG and I was told that I would be beginning A/C chemo every two weeks for four cycles tomorrow at Duke Cancer Center followed by Taxol every two weeks for another four cycles before surgery. So, it looks like I will be dancing with the Red Devil with my Duke Blue Dress On! Thank you so much for the information you have provided. I now have an indication of what to possibly expect. Yes, I’m frightened but I have to move forward and fight hard but I’m sure there will also be some whining along the way too!
Thanks for your blog, support and encouragement to so many!
Sherri
New Update on Sherri Since Chemo Began: I have finished my third A/C treatment but I haven’t seen mass shrinkage, in fact the mass has continued to grow. I originally had two similar sized masses connected with a strand of tissue. After a new mammogram yesterday, it was determined that one mass had either shrunk or leaked into the the other mass because the other mass had grown considerably. I am waiting for the doctors to determine what my next treatment step will be. I have been very fortunate that my side effects on A/C were very limited. It was the bone pain that really hurt the night after the Neulasta injection. However, my 12 year old son pointed out that if I was in pain, that meant the shot was working and so it was actually a good thing! I’m grateful to have the family support and that my son reminded me that it’s OK to whine but sometimes the pain is a good sign! Stay positive everyone!!!
I went through this in late 2006 and the memory will never go away. But there is a light at the end of the tunnel, I was almost back to my normal self within 3 months of finishing treatment.
Good luck to all of you strong ladies and complain all you want (you have reason to)
Emmy
Thanks for your encouragement to others, Emmy! Congratulations on
being a Survivor! Denise
Hi Denise, I came across your blog a few days before I had my first AC last Wednesday and I’m glad I did. All I heard was, oh it won’t be so bad, you’ll be fine, you’re strong, and I thought what if it is bad, what if I’m not fine, does that mean I’m not strong? As a wife, mother, daughter, sister, aunt & friend, I’ve tried to be strong for everyone, but that’s easy until you start the actual treatment. So I hope you don’t mind, I shared your blog on my face book, so my family and friends can see just what I have to possibly look forward to, and allow me to whine, if I need to.
I appreciate your honesty. I’d rather know all the bad stuff, and be grateful it doesn’t happen, then be surprised and think I’m just weak.
Take Care
Hey Eileen! I just finished my 4th a/c chemo last Friday. It has been really bad but I’m alive! Doubted it for awhile, but I did get through it. You will too! Allow yourself to feel bad, cry, sleep, and rest. I move on to 12 weeks of tackle now. I’m scared too not knowing how its going to be. I’ll be holding your hand as sisters brought together by something neither of us asked for in this life. We will come out ahead against the odds. Lots of love. sheila
Sheila,
I also have finished my 4 a/c treatments, today I go for my 4th of 12 Taxol treatments. I hope you will be pleasantly surprised as I was, at how much less taxing this is than the a/c. It’s still an uphill fight, but it’s isn’t as steep. Praying it is the same for you.
Oh thank you for that! I have been worrying myself to death about the Taxol! Even though my doctor said it wouldn’t be that bad I still worry. Everything you read about it sounds as bad as a/c. Glad to have someone going through it say it is easier. The doctor even said I had made it through the worst now I just sprint home. Lol. Not quite that easy but it does give you hope when he says it like that! I really love my doctor. Any time he has to tell me something negative, he always follows with a “but” and tries to give me the upside. Even in doing so, he never sugar coats the truth. That’s what I love about him. Praying for all women going through this. We will be better for it in the end! How is that possible? I don’t know, but I believe we will! Kinder, softer, more patient with others, and the list goes on. To anyone reading, please don’t let this make you bitter. Let it make you BETTER!!
Sisters in Love,
Sheila
I am so glad I found this blog! I just had my first A/C treatment on February 14th followed the next day by the Neulesta shot. Will have a total of four A/C treatments every two weeks and then 12 weeks of Taxol. Felt tired and a little nauseous off and on all weekend. Just reading everyone’s experiences however makes me a little nervous. I am telling myself to take it one day at a time. I am fortunate that I have a wonderful support system. All of you are such an inspiration to me!
I did it! I finished my 4th and final dose of A/C last week and just now regaining the energy to write about it. Diagnosed with stage 3 progesterone / estrogen positive breast cancer – Anyone else have same type cancer as me, as i haven’t been able to find someone else with my type cancer on A/C. This experience has been absolutely debilitating, the side effects overwhelming and compounded by the nasty neulesta shot. The worst side effects for me were light & sound sensitivity, migraines, chemo fog, neuropathy, muscle (legs & stomach) spasms, insomnia, heart palpitations & irregular heart beat. This has been a scary experience & I didnt think I would survive this. Kudos to all who have or are going through this. In 2 weeks I start on Taxol or Abraxiam (its taxol but supposedly less side effects), anyone here on Abraxiam id like to know your experience. Tears of joy knowing I will never have A/C again! Good bye to the red devil!
Dawn,
Congrats on surviving the Red Devil!!!
I had 5 treatments and it nearly killed me. But the GOOD NEWS is that your Abraxane infusions will feel like Disneyland in comparison….. The worst is over.
I have Stage IIIB Infiltrating Lobular Cancer and the dreaded IBC. Also PR & ER positive. Just had a modified radical mastectomy 2 weeks ago.
Best of luck to you in your next phase of treatment.
Debbi
Debbi,
Thanks for the reply, makes me feel better I’m not alone. Did you have any adverse reactions to the Abraxane? How long were you on it? Thanks Again!
Dawn
Hi Denise,
I love your blog, it is so informative, raw and un-cut. My sister has triple negative and is on A/C right now. I am her younger sister and I want to be as supportive as possible. I shaved my head along with my grandma, mom, friend, and her husband so she wouldn’t be the only baldie :). She had her first round of chemo today and is feeling like crap already. She has a terrible taste in her mouth and is having headaches and hot flashes. As her care provider, what can I do to help her? Any advice is appreciated! Thanks again for sharing your encouragement and information with us all.
Natalia
Wow, all of you shaving your heads is amazing! Hot flashes are normal.
I had them every 10 minutes right after AC. The taste is normal as well.
The good news is these symptoms will come and go. Some will stay for long
term, others will be only for a day. When my sister cleaned my house, it
was the absolute best gift she could ever give me! And just being there….
Thanks for the nice words about my blog. I strive to be honest yet hopeful,
truthful but not sugar coated! Denise
Hi Natalia,
I’ve just started A/C yesterday (March 4) so your sister is two weeks ahead of me. I love that you all shaved your head! Go Mom & Grandma! That is amazing. My fiance is going to shave his head too, but it pretty much already shaved so not a big change.
My partner has been my main care taker, and my sister was here just after my mastectomy and reconstruction for about a week. They were/are incredible. I suppose that everybody is different, but I what I loved is that they would check in with me to see if I need anything (sometimes every 30 minutes, sometimes longer if I was sleeping or doing anything). Then, they’d either get what I wanted to leave me a lone to rest. While many friends mean well by coming to visit, it is taxing to have to talk for awhile. Other things they did if I was feeling sick:
-offer a wet cloth for my forehead
-check to see if I was due for some anti-nausea meds and/or if I could take tylenol (we have a pretty good spread sheet set up)
-give me more blankets or fewer blankets.
-make me food
-put cream on my feet and massage them (only my sister did that one, my fiance is not big on massage)
-offer tea from time to time.
-check to see if I’m drinking enough water (we have a liter bottle that follows me around with the date and a box for how many I should drink that day. I check off the box or put a start sticker in it to show I drank that liter).
-hang out and watch a movie
-do laundry (only certain things I feel like wearing, so we have more laundry than usual. Plus, with immune system down, I want sheets and towels and blankets as germ free as possible)
-clean the house & kitchen. Get food
Now, it sounds a lot like I’m a lazy, lazy person! I’m not! I try to help when I can and get up to exercise (still doing exercises for my reconstruction where I had a DIEP flap which left a big scar on my stomach as well as smaller scars breast and lymph area) And, I’m trying to get out to walk even though I don’t feel like. But it is amazing to have the support! Also keep in mind, that everybody is different.
I wish you all the best through all of this! And sorry that I got so long-winded in my post!
Hi, I had my third ac treatment last Tuesday. The nausea is better today but the depression is tough. I feel like I have a happy block!! as in something blocking any feelings of happiness…LOL. Does ac cause depression? I have one more AC treatment and then four taxol. I believe this is called dose dense. I am so happy to hear that the taxol may have less side effects. After reading these posts, I realize I have been lucky as all I have had from the AC is nausea and feeling depressed. Any one have the miracle cocktail of anti nausea drugs???? I would pay large amounts of money for that recipe!!! LOL. Thank you all so much for your comments, it really helps to know we are not alone in this battle.
Hi Marsha, so sorry you are on this road. AC definitely causes depression as do the steroids. I’m still apologizing
to people I was nasty to during steroids! Nausea is its own horror!! Hopefully, Taxol will be better. At least you
shouldn’t have any nausea! I tell people with AC you don’t care if you live, with Taxol you want to live. Big
difference!
Sending prayers and good wishes your way, Denise
I watched a documentary called Pink Ribbons. The woman who originally made the ribbon it was a salmon color but a company wanted to use it and she said no because at the time she didn’t want it mass produced so they made it pink so they could use the ribbon.
I just started AC and I feel like hell. It’s indescribably wretched. The one thing I noticed RIGHT away perhaps from steroids was the depression and agitation … I quite literally felt to be in a pit of despair. I’m working through it and it’s day 5 after 1st infusion. Please tell me it either gets easier or that there’s definitely light at the end. When you’re in darkness, it’s hard to see the light.
Thank you for your wisdom!
xoxo Nicole
Nicole, AC is tough – as one of my blog readers calls it “legalized torture”. But the steroids
are what really do you in. The depression and agitation I think are caused by the steroids. At least
for me. One year later, I’m still apologizing to people I told off during steroids – LOL. Being in a dark
tunnel, Nicole, is absolutely how you feel. It is so dark and black and feels so long. My advice is
that it will get easier and you have to cling to every little bit of light you can get. I hope your loved
ones can help provide that to you. Sending a hug and light your way. Feel free to email me any time
for encouragement – b4Denise@hotmail.com Denise
Hi Nicole, I had 4 rounds with the red devil. All of them made me feel depressed and soooo ALONE! I told my husband when I felt myself slipping into that dark hole. I don’t know if you believe in God but I do. I would feel like I was locked in my own mind. I didn’t understand what people were saying or comprehend what was going on around me. The one thing I do know is that God was the only one there with me. He was the only one that could break through that wall and reach me. Without Him I can’t imagine how anyone could make it.
I’m half way through 12 weekly treatments of taxol. I dance to the office for these. I can’t wait for Fridays to get another one behind. You still have hot flashes and a little depression but its nothing like a/c! At least not for me. To me the side effects are bearable after having a/c.
Nicole, when you’re in that dark hole remember all of us that have been there are holding you. I will be praying that God will show you He’s there just as He did for me. Now lets kick some cancers butt!! We might be down but we’re not out! We WILL win this battle!
Sheila
Per my last post A/C completed. I’m halfway through my weekly Abraxane (newer form of Taxol). Anyone know the difference in side effects from weekly vs every three weeks. Weekly seems Much easier to tolerate but still have unbareable hot flashes constantly. How long after chemo is done until hot flashes stop! Any suggestions on how to ease the discomfort? Also my hair started growing back, will it fall out again? Thanks
I finished Taxol 3/15 sorry I still have hot flashes but not as often and my hair has been growing about 6 weeks. My eyelashes are growing and I see a few hairs on my eyebrows. You are doing great!!
Hi Shaun, thanks for the update. Congratulations on finishing Taxol!
My eyebrows would come and go! It was kind of weird. Are you doing rads? Denise
Hi Dawn – weekly is supposed to be easier…my hot flashes left after chemo finished.
Your hair shouldn’t fall out again once it starts growing!! My eyebrows kept coming
and going, but hair and eyelashes stayed. Keep up the great work! You are making it through! Denise
Appreciate all the great feedback, it really helps me to get through this.
I am not sure if it is possible for you; but talk to Drs. about Effexor for hot flashes…I was positive for estrogen/progestrogen and had hysterectomy + ovaries out 4 years prior to surgery. They took me off estradiol and I knew I needed an alternative. I was able to wean off effexor after 3 years – it is now 7y and I don’t have meds (but some hot flashes now and then) but nothing I can’t handle. I had no luck with generic — it had to be time release to work. ((hugs)) Abbie
Aren’t there any alternative treatments to Adriamycin? Can’t they reduce the amount? I had 12 treatments of Taxol and did fine. Then I had my first DD AC and it was dreadful. I had many of the side effects discussed here but the chest pain and heart palpitations really scared me especially after reading how cardiac toxic the chemo is and the longer term side effects to the heart. I had a stress test and echo cardiogram and they cardiologist said my heart is good. I am dreading the next 3 infusions and I am trying to find an acceptable alternative to the Adriamycin. What is this about – picking your poison???
Hi Arlene, I totally agree that Adriamycin is dreadful. One of my blog readers calls it
“legalized torture”. If you are that fearful of long-term effects of it, I would definitely
suggest talking with your Oncologist about it. I wanted to quit, but now
that I am a year out from Chemo, I am glad I completed it. It is so hard. Sending a hug
your way, Arlene. Denise
Thank you Dawn – appreciate the feedback. I am glad to hear that they can at least lower the dose! Oh yes the depression and weepiness came out of nowhere. Glad to hear it goes away 🙂
And thank you Denise for your advice and hugs!
I had to have my dose lowered otherwise I would not have been able to finish the treatment, even then it was still so tough. Tylenol & clariton take for the migraine & body aches. Wear sunglasses & keep lights out to help keep the migraines at bay. Took lots of ginger & lemon for stomach & naseau. I too asked for an alternate chemo but was told they all have bad side effects so I felt like I had no choice. Drink lots of fluids! I would get a litter of fluids infused day of & 2 days following treatment which helped. So important to stay hydrated. I still can’t believe I survived A/C . Good news is after 1 & 1/2 months after finishing A/c the depression, heart palp, & other bad effects finally went away. Good luck.
Some people have all the luck, some of us don’t. This July I will be 15 years cancer free. I had the chemo cocktail, the red death and the long term effects. Only since last year has my body started feeling better. All the symptoms Denise described I understand them all. But mine dragged on for years. The chemo destroyed so much. I was only 38. It destroyed my female system, my teeth (I now have dentures) but worst of all my liver. It took 13 years for my liver to heal. I still have neuropathy and the hot flashes which are more like heat waves. But my blood tests are all normal again, kidneys, liver, sugar, my heart is stronger than ever. and I’m alive! I still whine, lol.
Lisa, wow, thanks so much for posting this. I am so sorry that you had to
endure all of the long term side effects for so many years. And congratulations
on being 15 years cancer free. But your post is important to all of us who
expect to be “all better” right after cancer treatment is over. We feel guilty
because we do not. And you explain the terrible effects on the body. Thank you for
sharing your journey. Denise
My name is Emily, I am 23 years old and was diagnosed with mucinous invasive ductal carcinoma a few weeks ago after my biopsy. The doctors have determined I am stage II, as one suspicious lymph node came back positive after another biopsy last week. I have yet to have surgery to remove my 1cm lump in the left breast, and it appears that it won’t be removed until after Chemo. I had a genetic test done as the only person to get this was my grandmother on my fathers side and she was 70 years old when diagnosed, she is now 88 and cancer free. I tested negative for HER2 but positive for the estrogen/progesterone. I’m still waiting on the results of my MRI. On Monday I will go in for surgery for my port, which I am overtly nervous for. After reading your post I feel that the port surgery will be nothing compared to the A/C treatment. My doctor has me going on the FAC treatment for 12 weeks 5-FU, Adriamycin, and Cytoxan (I’m guessing thats once every three weeks, I was too baffled to remember everything she said that day) and then the Taxol for 12 weeks. I’m not sure how my body will react to the drugs, and I guess my biggest worry is the heart complications that may arise. My entire family on both my mother and fathers side have all had heart problems, including heart disease, and heart attacks. I’m just worried I’m at a greater risk for the heart problem side effect with these drugs. I start my treatment on Wednesday, and quite frankly I’m very afraid to start treatment.
– Emily
Emily, I am just so sorry you have to go through this at 23 years old.
I am sending you an email immediately. Denise
Hi Denise,
I just wanted to update you on my progress so far, I finished chemo last month finally! My reactions to the FAC were definitely worst case scenario in terms of side effects like nausea, etc. I was knocked out for pretty much a week and half, whenever I was awake I would be either dry heaving or puking out my guts. My doctor had prescribed me pretty much all the nausea meds available and the only one to work had been Ativan. I had a week and half of being somewhat back to normal, tired but no more nausea. I was one of those ladies who went to work when I could, and stayed home when I couldn’t. I always had to take an Ativan whenever I went to infusion because I would start dry heaving the moment we parked in the parking lot at the clinic. I learned not to eat anything at all the day of infusion because I would get sick and then be unable to eat that same food or even think about it without feeling sick. I still to this day can’t eat or think about those food items without feeling nauseated. My taxol was so much easier to get through, no nausea! And my hair started to grow back, although some of it started falling out again around my last few infusions. I did have nosebleeds, headaches and the numbness in feet/tips of fingers, but it wasn’t as bad as I had heard people say and the effects wore off two weeks after my last treatment. The results of my gene tests (I had two done) were all negative, so the doctors are baffled as to why I have breast cancer at such a young age, as I mentioned before my grandmother was diagnosed 20 years ago at the age of 70. My aunt who is almost 70, was just diagnosed with breast cancer as well. Maybe I just got it earlier than I was supposed to? I had a lumpectomy and axillary lymph node removal two weeks ago. 4/16 lymph nodes were positive, which confirmed me at stage III instead of stage II. My tumor was removed with extra margins which unfortunately came back positive microscopically. I had a re-excision yesterday but my doctor isn’t sure if she had gotten it all since she can’t really see where the cancer is anymore. 50% of my breast is gone, but I’m okay with that because I would rather wear a partial prosthesis than a full set. If this next one comes back with positive margins then I intend on doing the bilateral mastectomy without reconstruction as I will still need radiation on my chest and arm, and I don’t believe my reconstruction options are in my best interest as I don’t qualify for the immediate reconstruction due to radiation. My options were flap reconstruction which is taken either from my upper abdominal muscles or my back muscle and I really don’t want anymore scars or surgery time six months after treatments are completed. My plastic surgeon told me id be in ICU for a week after reconstruction, and that didn’t sit well with me one bit. I’m in a bit of pain and still can’t raise my arm up over my head, but no one expected me to have full range in two weeks after removing half my lymph nodes. I just can’t wait for this all to be over with! Fingers crossed I don’t have to have that bilateral mastectomy!
Good luck ladies!
Emily
Emily! The port surgery was really minor for me and it made getting my chemo infusions so much easier (they didn’t put mine in until my 3rd infusion after having trouble with my veins on #2). But I was also nervous about it, which is very normal.
Please keep in mind that everybody is different and your reaction to AC may not be like anybody else’s. I never really experienced nausea (the meds they gave me did a great job of controlling it), and you will get through it! I’m now on taxol, which has so far proven to be much easier. I also have a friend who just started her AC and she did extremely well on her first week. The in between time helps you get stronger and ready to go back in and face it again.
I’m thinking of you. Hang in there, you can do this!
Hello Ladies. Just wanted to say, that after having Adriamyecin /Cytoxin /Taxol /Herceptin, and follow up with aromatase inhibitors I KNOW it is a hard row to hoe. I preferred to call myself a “tank – camo pink please” – because although I did not make good mileage, I had a great support team and made it through to the end. That was now 7 years ago. I was one of those who went through a lot of drama during the episode, not by choice, but by chance. I found that those who wondered ‘how did you do ALL that’ – all I could ever say was ONE step at a time – one day at a time! So — for all of you going through this now — here’s a toast to you — YOU CAN DO IT!!
I like your attitude. Going through the shit myself. I will survive, and I will try not to complain too much. (My wonderful husband might think otherwise.) Thank you for the good advice.
Abbie…… did you develop neuropathy in fingers/toes/feet after because of Taxol….I did…it has been one year since completing Taxol and this is still with me….my oncologist. had me taking L-glutamine powder daily and recently I stopped it as he commented….well it’s been one year…it probably isnt going to do anymore for you…as far as nerve health. : ( Frustrating, but praying in time it will improve….I don’t really feel safe to drive….and that is awful…I have driven a bit, short jaunts from house….but not feeling the pedals well….is not a good thing. Do you know if there any other suggestions to help w/ recovery for this condition?
hi my name is janet from dublin ireland. i am going through A/C CHEMO at this time will go next week for my third treatment .Ifound 2nd dose was a bit harder .but still able to do everyday things . started to loose my hair on day 17 just a little but on day 20 had a shower and OMG. IT was like the water killed all my hair .My hair was like a birds nest i had to brush really hard to get through and then all my hair started to come out in handfulls thats when i noticed my first bald patch . my husband martin and me had a good cry and then i said enough of that and we went in and called our four children ages 15,13,12; and 9 for school .so i would just like to say to anyone waiting to start chemo its not so bad yeah its not a walk in the park but we just have to stay positive and keep going and take each day as it comes and BE STRONG …….
Janet, thanks for your wisdom about AC…so many women appreciate it.
And thanks for telling us your hair story. Mine started falling on
Day 17 as well. Someone warned me to have a drain plug in or you
would need to call a plumber.
Keep up your strength and continue down the path! Sending you my best, Denise
Hi Denise, wow is what i say and if some consider it whining than so b it but its poison in our systems that wreck havoc on many things so if whining helps i say go for it! I am 39 and am on the AC regimen myself and have had 3 of the treatments, i have been fortunate so far with side effects and am bery proactive i take all the meds they prescribe and take tylenol before every neulasta shot however i still feel cruddy for 3-4 days after treatment! My biggest complaint was just when ur feeling good u got to b poisoned again and i say everytime can we just go home!! I had my double masectomy in Feb and ladies honestly it was great if we can get thru this chemo junk we can get thru it all! I believe in a statement i read from a cancer survivors book its not what its doing to u its what its doing for u!!! Hatd to believe but so true!! Heres a statement from my husband bc the last two treatments i cry for over an hour he says to me honey think abt it like this when u had the tumor u were sick u didnt know it but it was making ur insides sick and now ur on the recovery train and ur not sick anymore! I never looked at it that way bc cancer doesnt hurt but feeling good and havin to feel like poo is hard to grasp!!! Ok sorry i cud go on and on but all us ladies thete is light at the end of the tunnel and We CAN do this!!
Best wishes to u all
Gina, Illinois
Oh Gina, thanks so much for writing! I am sorry you are going through this, too!
AC #3 is usually about the worst. And oh it is so true to want to just keep driving
and not go to get the poison! Your husband’s wisdom is great also.
Thanks for all the encouragement you just gave to others!
And please check back and let us all know how you are doing! Denise
Hi Gina
I am finished with chemo and radiation. I had a double masectomy August 2012. Yes the red devil was rough and there were days I didn’t think I would get through it. Praise the LORD I did and with his GRACE all things are possible. I will be praying for you and the months to come.
Dee Ann
Hi Denise,
Today I finished my last taxol treatment. I am 3c her2 triple positive. I had a double mastectomy in October. I had my port put in in November and started a/c 2 weeks later. I had to take 4 rounds. My hair started coming out Christmas Eve. I went home to my boys ages 21 and 25 for Christmas. I came home knowing it was time to shave my head. I sat at my vanity table and cried for a long time. Finally I heard God speak to me and say,”My son went through so much more to give you eternal life and all you have to do is cut your hair and you’ll have a longer earthly life.” With that I started cutting and shaving. I had 4 a/c treatments then 12 weekly taxol herceptin treatments. In 2 weeks I start daily radiation for 4 1/2 weeks. I’m really nervous about radiation. Can anyone that’s had it daily for this long give me some advice? I really would like to know what to expect. A/C was hard, but I made it! Taxol was a breeze in comparison!! Now I’m worried about radiation. After this is over I will take herceptin IV every 3 weeks until March 2014. Hopefully after that I can have the reconstruction surgery. The doctors here don’t want to do that surgery until you are cancer free. I would really appreciate any feedback.
Sister bound by A/C
Sheila.
Sheila…..thanks for sharing your story…my diagnosis was 3 C and triple + as well……July 2013.. I had A/C, lumpectomy, radiation and just completed my year of Herceptin in Oct.2014. My question to you is did you have lingering mouth awful taste…I began Arimidex in Aug. and that seemed to make my mouth worse…it really has gotten to me !
My oncologist decided to switch me to Tamoxifen even tho I am post menop. Seems to have improved some…but really eating still is absolutely no joy…. I do not want to loose Hope of improvement : /
one other lingering side effect I have is neuropathy, from Taxol…very frustrating…and does not feel improved at all….one year post Taxol……
I trust all went well for you w/ rads…my dr. recommened using aloe vera gel on my skin at least 2xs daily and I did this and was fine…I had 33 treatments.
Fatigue was the main side effect. I have been doing daily exercise to help improve my overall stamina.
Have you had reconstruction? and how are you doing overall?
Hi Cindy,
I wish I could say all is well here. Truth is, the neuropathy seems to be getting worse. Also I’ve now developed fibromyalgia. Now that really sucks! Thankfully I’m finding medication to help with that!
I never really had the bad taste with the taxol. I’m taking tamoxifen right now. I’ve been on it for 2 years. Later this month my oncologist will change me to Arimidex for 8 more years.
I did have reconstructive surgery. Well, I had 5 surgeries! Boy, that got old really fast! I’m glad I did, I just questioned if it was worth it after each one. While lying there the first day or two I would moan that breast just wasn’t worth all of this! But in the end, I was glad to have my girls back again. It’s not bad to be 50 and not have to wear a bra if I don’t want to either! I have 2 sons 22 and 26. I took a picture with with my cousins that are my age or close to my age. My boys saw it on Facebook and called telling me how great and young I looked after my last surgery! They have been my biggest support.
Truly Cindy, I’m finding some things gettings better since treatments. But, lately, I’m finding life getting harder the further out of cancer I get. I sure hope this will pass. Is it getting harder for you too?
Denise: Thanks for sharing such an informative blog. I was first diagnosed on 2/21/13. I had just had a mammo/sonogram on 9/11/12 and all indications were that everything was clear. Over President’s weekend my 6 month old rescue kitten jumped on my left breast which really caused an odd pain. I found what was hard marble behind my nipple. I knew right away this was the dreaded C. I had a dbl mastectomy on 4/12/13 and started A/C on 5/23. I had very little side effects so far. Tomorrow I will start my second treatment and am praying that I continue to feel as could as I do. I went back to work 3 weeks after my surgery and so far by the grace of God haven’t missed a day. I was dreading the day after Neulasta shot but had read that taking Claritin 2 hours before and ever 4-6 hours after the shot helps minimizes the pain. Guess what I had no pain (huge God send for me). I did start feeling the effects 3 days after with palpitations and nauseau. I decided to give acupuncture a try since my insurance covers. In the midst of a really bad post chemo day I went and had this done. I can’t even begin to tell you how much better that I felt the next day. It was AMAZING! I haven’t been nauseous since. Needless to say I’ve booked my appointment and will continue doing this throughout my entire treatment. I’m hoping to avoid taking any of the post chemo treatment that they’ve prescribed. Also, I’m planning on doing Bikram yoga which cancer patients swear by. I know with this treatment I’ll be losing my long blond hair and have made my peace with it. My sister had BC two years ago and now has a beautiful head of hair long and wavy. I know from her that is a long, tough road to walk but I know I will get through this and be that much stronger and a better person because of it. I’ve already started planning my trip to Hawaii for New Year’s. Wishing all my fellow pink warriors patience and strength. Theresa
Oh Theresa, it is good to hear from someone with very little side effects from AC!!
That is an encouragement to so many. There is no rhyme nor reason why some people have
horrible side effects and others kind of sail through it. But I am thankful to hear
your story and your input about acupuncture and yoga! Thanks so much for this. It will
help others.
I pray you continue to do well…and as for hair – my new hair is much better than my
old hair. I kind of hate to admit it. God’s gift after BC…I am so glad your sister
is doing well 2 years later.
THANK YOU SO MUCH! And thank God for that kitten! Denise
I was diagnosed with triple negative invasive ductal carcinoma in March. Had a lumpectomy and sentinel node biopsy in April with clear lymph nodes and clean margins. Just finished my 3rd A/C treatment with 1 more to go. I receive a shot of neulasta the day after treatment. Extreme fatigue sets in on the 2nd day after treatment and it’s the couch/bed for me for the next 3-4 days. Start to feel a little better and than get to do it all over again. I am 63 years old and my oncologist told me that I am handling chemo as well as could be expected. My blood counts have been good. But now I’m stressing about my next 4 treatments of Taxol. That is really scaring me.
I finished my AC treatment at the end of April and then began the Taxol. Even though I had some side effects (some pain in my toe and finger nails called “nail toxicity”, a little neuropathy, and some minor skin rashes), the Taxol was TONS easier for me. I also had a bright red face the day after Taxol which was probably a minor allergic reaction, but it always cleared up in 24 hours. It sounds like you and I had similar AC experiences as that was my routine as well. I was on a dose dense schedule and also needed neulasta. Unfortunately, they put me back on Neulasta after my first taxol treatment because my blood counts were low, so for my next two taxol infusions I also had neulasta. In some ways, the neulasta was worse than the taxol for me regarding joint/muscle pain—- on my very last round I did not need to take it and I have felt much better throughout. I am now all done with chemo! Finished last Wednesday. I think you will find that being on Taxol is closer to being “normal” than being on AC is. I wish you all the best!!! For me, onto phase 3 and radiation starting July 8th. New things to be nervous about! Take care of yourself, you can do it!
Kaleen- congratulations on being done with chemo!! That is such an accomplishment!
Thanks so much for sharing your experiences to help others! I appreciate it! Denise
Thank you to Denise and everyone who has so generously told her story here. Your experiences will help make someone else’s life a bit easier. For example, I have an old childhood friend going through AC treatments now. (Two treatments down, two to go.) Knowing that she is enduring “legalized torture” helps me think of ways in which I can be truly helpful to her and her family. I am so happy to know the side effects of the AC will go away & that the taxol is a more bearable drug. Good health and happiness, to all!
Thank you ladies for sharing your experience. Tuesday is my last AC Red Devil infusion. This information helped explain my swallowing issues. I thought it was reflux. My bladder was also affected by AC . I was given perineum to counter the pain. Also they gave me more fluids before the infusion to push it through. Yeah, it’s tough. Definitely the heart is affected. I have pledged once over this I am going to take working out more seriously. At 63 I thought I was in shape, but this AC knocks you down. I found weekly massages a plus getting out the kinks in my back due to stress etc. If can’t afford it the nail salons are cheaper. Food is an issue clearly , forcing myself to eat protein to help my muscles is top of the list. What keeps going through my thoughts are the children with cancer. I do donate to Ronald MacDonald’s house in NYC but feel we need to help these children. How do you explain this to them? So Ladies we must fight. THis blog helped me see this torture is common. I hate to whine so I just do what my body says it needs- rest, drink water, pamper yourself…survive.
I so agree with everything you said here…just reading the paragraph of all the side effects, etc., brought me to tears because of the memory of going through that VERY thing at this time last year. You said it perfectly: “It is in the past but it will never be forgotten.” People that haven’t been through it can never truly understand—do you mind if I quote you on my caringbridge site? :o)
Hi Jennifer – I know – I have a hard time going back and reading it now.
Like you, I can be reduced to tears in a heartbeat. My brother-in-law is a 35
year cancer survivor. He has never forgotten chemo. That helps prepare me. Please feel
free to quote me. I would be honored. So glad you are through treatment! Denise
Reading all this brings me hope. I have Stage 2, Grade 3, IDC. Just finished my second round of A/C. I have awful side effects. The worst is the pains in my chest a few days after chemo. It’s scary. I called the dr. and was told it was probably heart burn, palpitations, or the “poison” running through my heart. I also have other symptoms that are embarrassing, like the hemorrhoids, loosing my bowels (this was the worst), my vaginal area swelling, mouth sores, fatigue, and chemo brain, body pain. I thought loosing my hair would be the worst, now I am happy to have none so I don’t have to take care of it. I wish I could read a book, or focus on a movie. One great thing out of all this is that because I spend so much time laying around, my girls come and just sit with me (or snuggle in bed with me). They have shared so much about what they think and feel about everything and anything in life that we are so close. I never realized that being on the go all the time, and having the energy to form an opinion, redirection, or comment, interfered with their sharing. Now I just listen and watch them bloom.
Thanks for listening to me whine. I feel better. Reading these posts makes me stronger and less alone. There is a light at the end of this tunnel.
Marybelle
On October 10, 2012 , my birthday, I was diagnosed with breast cancer. I was in stage 3C herceptin triple positive with 2 cancers in 1 breast. After a mastectomy, 4 Red Devils, 12 taxol, and 30 radiation treatments I finished TODAY!! I still have to have herceptin every 3 weeks until march 2014 but that’s okay. I’m just proud of today. I hope I don’t ever have to dread another treatment. My heart accualy got better with the treatments. My doctor said he’d only seen it 2 times before but it does happen. Praise God!!
Sheila – hooray, congratulations! What an accomplishment! So happy for
you. You will slowly start to get better! Wow, never heard of anyone’s heart
getting better with treatments! What rare but wonderful news. Thanks for letting
us know! Denise
I had my first red devil treatment this week, and it has been rough. The Neulasta shot is no fun either (the aching is awful!!). I am taking it day by day. I am so glad the red devil isn’t weekly! I am encouraged by your site, and I am thankful for your openness and honesty. 🙂
Kristin – the best you can do is go day by day! It is all so challenging.
The next drugs will be better. As one of my readers said, “The goal is to
get the through the red devil.” That’s it. And as my Oncologist told me –
take the anti-nausea pills. Don’t be a heroine. There’s time for that
when AC is done! Keep up the great work! You can reach that goal, Kristin!
Kristin – I posted something to you in the wrong place – so I will try again. After my first week I thought there was no way I could make it. Since then I’ve learned a few things. Most importantly, eat lots of protien, ask for IV fluids about 3 days after chemo, use baby wipes when you go to the bathroom, and ask about your white blood cell counts. My Oncologist told me to take Claritin the day before and three days after the Neulasta shot to prevent bone pain. It totally worked for me. There is no known reason why it works, it just does.
Good luck. Many blessing to you.
mb
I just started the Red Devil this morning and have had a good day. I am so anxious because I hate being nauseous and keep waiting for it to hit. I have some good drugs to take if that happens. I actually volunteered for a clinical trial drug study so the Research Nurse has been so attentive to me that she’s like my chemo buddy already. Hubby was right there with me all the way. I heard about Benadryl and Claritin from someone who’s mom is going through treatment. Weird!! Thanks for the wonderful article. You made my day!
Donna, best of luck to you! The best thing you can do is take those meds before
any nausea hits! Good for you for doing the clinical trial. You help all of us
by doing so! You will do well. I can just tell. My best, Denise
Thanks Denise for the article. My mother has Triple negative breast cancer and recently finished her fourth cycle of the red devil. She had most of the symptoms you mentioned, and I think it was not thoughtful of your friend to comment like that.
My mom started with Taxol today and things seem better already… There is no usual immediate sideceffects like headache, over-fatigue and aversion to food… However, there is one major problem, it always has been one: the nurse always has a problem finding veins to administer the chemo… It had been that way for her from way back, but the nurse also suggested that chemo sessions tend to weaken veins and make them thinner.
Did you or anyone you know had a similar problem? It pains me a lot to see my mom undergo so much torture each time, she was pierced about 7 times today.. now it will be a weely dose…
Ganesh, I am so sorry your mom has to go through this. I had a port placed as recommended by my Oncologist so my veins would not have to go through what your mom’s are…It helped tremendously, even though they were not perfect. If she does not want a port permanently placed, there are other ways it can be done. I would check with her Oncologist to find a solution.
Also, please be sure to read my posts about Taxol and Icing Hands and Feet During Taxol. It will help your mom. My best to you, Denise
Thank you for the article. I started with a different protocol but was switched to AC after 2 rounds because I could not tolerate the taxotere. Your article perfectly describes what I went through. My mother-in-law told me as well to quit being a baby “breast cancer is now cured”. My husband still believes I was that way on purpose and refuses to acknowledge that chemo made me a banana lady, it was “my fault”. Thank god it’s over and thank god for your article. It is nice to know I wasn’t nuts after all.
Oh Nancy, I am soooo very sorry you had to endure those comments from people
who are supposed to be supporting you. No, absolutely you were not nuts! I
had a heart attack during AC which is a major side effect. I hate what cancer
patients have to go through by virtue of people’s comments. Sending a hug your way.
So thankful I found your blog. Just finished the AC portion of my treatment and it was really rough. This last one (4th) was the worst. My nausea was just never able to be controlled and worsened each time. I’m doing dose-dense, every 2 weeks, for triple negative. Hoping the Taxol is not as bad. Is it really lighter on the nausea? I’m afraid I may have developed anticipatory nausea since I begin retching when I step into the infusion room now. I ran across your post about icing the hands and feet. Called my onco today and received approval to do it. Thank you so much! That was one of my worst fears….neuropathy. Bless you, Denise.
Hi Karen,
My mother finished 4 sets of AC and is currently under Paclitaxel (Taxol) every week (This Saturday marks 9th). Her nausea stopped completely after AC and initial 4 – 5 weeks of taxol was great without much side effects. General weakness and gastric troubles aside, mom says its a breeze compared to AC. However, The neuropathy started kicking in during 5th and 6th weeks and has been gradually increasing ever since. Docs have given her pregabalin, which makes he feel light-headed but helps with the neuropathy. Also, there was an elevation of the liver SGOT and SGPT counts. I think it was due to the pain killer Ultracet which the doc had prescribed earlier for bone pains (which was due to filgratsim – WBC regeneration). After having 4-5 times the normal counts, we had stopped taxol for about three weeks for allowing reduction in counts; and stopped Ultracet altogether and went back to paracetamol for any pains. The doc also reduced the Taxol dosage from 130 mg to 100 mg (Seems they calculate the dosage based on the tumor stats – and provide 80% required.. not sure how this works.) This seemed to reduce the counts last week; There is a blood test scheduled today before tomorrow’s chemo session. I shall post the results again.
Hope this helps, and all the best! I think the worst is over !!
Hi Everyone, Denise, I want to thank you for this informative blog. I came across it by accident. I am most appreciative to find you. Did my Dr. get it backwards? I am going through 12 weeks of taxol, and then start on the AC for 4 treatments, every third week. Taxol has really been easy for me. The side effects have been minimum. I feel a little tired and irritated about 3 days after the infusion, but that is about it. I have been having weekly shots of Neupogen, because the Taxol has been taxing on my white blood count.(I would not have known it was low if I was not tested). The shots give me lower back pain on the evening of the shot. Reading all of the stories about the AC, or red devil have got me really worried. Is there anyone out there that had the Taxol first, and anyone that had few, or minimal side effects with the AC?
Jan, I am not sure why, to be honest, but some people do Taxol first
and AC second. I do notice those who go through AC second, often do better
because you have chemo experience under your belt. Doesn’t mean it is easier,
but often you are just used to side effects coming and going and it isn’t quite
as scarey!
Oh absolutely, I have heard from women who have had hardly any side effects with
AC…drink alot of water. It helps!
Hi ladies! I did Taxol first because my doc wanted to pair it with Herceptin right away because I am her 2 positive. Just thought I would share. 🙂
I will be starting this dance in the very near future. So many people tell me to stay strong, or that I am the strongest person they know and I will do just fine. Well excuse me for wanting to just punch them. It’s like they just expect me to push through and suck it up. Guess what dear friends, I know this is gonna kick me into the dirt, I will fight, but don’t be surprised if this once strong person turns into a ghost of herself for awhile. I am sure people just say it to be supportive, but if they actually think about what they are saying they would realize the amount of pressure they put on those of us who are facing being as close to death as possible to fight this nasty disease.
Trish, well said! I almost punched a few out myself! You are right – it
does put the pressure on the patient. Never realized it until you said it!
Because of your wisdom, you will get through this. I tell people being positive
some days is just getting out of bed.
Please feel free to contact me any time if you need encouragement or support…
b4Denise@hotmail.com
Thanks Denise,
I just politely nod and smile. People ask me ” How are you doing?” Excuse me how do you think I am doing .. Once again it’s a polite appropriate question, but once again that urge rises, so I politely smile and respond, I am tired. Already tired, and I have not even begun the full battle. It’s the pretending I am fine, keeping the emotions hidden from the children, friends, and even my husband ( because they are all expecting me to be a warrior), then there is the pain,that is wearing me out.
So many people told me in the beginning well it’s good that you hurt, it means it’s not cancer, because cancer doesn’t hurt. I just looked at them. Guess what dear friends, it does hurt, when the mass starts to affect surrounding tissues, it hurts like the dickens. In fact it was the pain that prompted me to go get examined.
The hardest part for me is giving up control, letting others take over. I am a control freak, I freely admit it.
Trish, you sound a lot like me. I too put on an act for my family to remain strong for them and continued to do everything that I had before my diagnosis because I am also a control freak. However, I will caution you to not over do it. Unfortunately I did. I was cleaning house and I guess my white counts were too low and I apparently passed out. I fell and broke my foot. My foot actually took longer to heal than my cancer so please allow yourself some “me time” to heal and let your family help out. It’s OK to tell your friends the truth because you will need some help along this journey.
Wise advice for Trish, Sherri. I will chime in as I am a control freak too. One of the best
pieces of advice I got was from a friend who had been through many surgeries and sicknesses. I apologized
when she stopped at my house and I looked so bad. She said, “Denise, this is what cancer is about…
do not try to hide it. People have to learn the truth about what you are going through. It
does not help them for you to hide it. You need help. Do not be ashamed to ask for it.”
I think of that advice all the time. From that point on, I asked for help even though I hated
every minute of it. To get my control needs met, I would get in my car and just drive around
since my blood counts were low. It helped a lot!
Trisha, I too had people telling me that because my breast didn’t hurt, it wasn’t cancer. I had just gotten married and moved to a little town. I knew nobody. I waited until I was going back to my home town to see my regular doctor there. I almost waited too long. I had a very aggressive rapid growing cancer. When I got results I was already 3c her 2 triple positive. Yes, cancer does hurt! Hurting is what made me go to the doctor. I was diagnosed last year on Oct 10. My birthday…..
Being strong is not pushing through the treatments, it’s getting back up. Allowing yourself to rest and heal. Rest brings healing. This too shall pass and you WILL live again! We might be down for awhile but watch us when get up!
I have no issues with giving up the housework, heck I hate it anyway : ) , For me it’s budget, grocery shopping, the day to day operations. For a good many years it’s been me that pays the bills, works out the budget, gets everyone going in the mornings, figures out weekly meals, groceries,etc. So this is going to be an interesting lesson for everyone in the house. Mom won’t be able to keep it going, so time for them to suck it up and do things on their own lol. I am or rather we are blessed that my husband works for a wonderful company who has agreed to let him work from home while I am recovering post surgery, and during my Chemo treatments, this in itself will be a great help.
I have a wonderful husband who is already realizing that this is going to take it’s toll on me. I had a very bad biopsy , they hit a nerve ( which isn’t uncommon) but the pain still persists 3 weeks later. While it is getting better, he knows that I would much rather sit with heat packs than do much of anything, so he has reminded me if I feel the need to do something fine other wise let it sit and he will take care of it when he gets home.
I am also truly blessed to have a great circle of friends and neighbors, heck even strangers around me. They are all ready to jump into action when I can no longer handle everything.
Hello ladies, I was diagnosed with stage 2 triple negative breast cancer on October 1, 2013. That had to be some of the worst news I had ever received concerning myself and at first it was very hard for me to deal with. I cried and was scared, but then I said, that I would fight this with everything in me. Due to my 19 year old daughter dying from leukemia in 2004. I just finished my 4 rounds of treatment with A/C and will be on the next 4 rounds with taxol. A/C was no dance in the park, I had most of the side effects including losing all of my hair, which was another devastating experience. I also get the shot to boost my white blood count, which causes aches, but I combat them with Motrin 600 and gabapentin. I am praying that the Taxol isn’t nearly as bad as the A/C. I have been getting through this with a whole lot of praying and listening to gospel music, and trusting that God will bring me through. I refuse to let cancer take me, after it took my daughter.
Thank you all for sharing your stories, it helps the next lady going through the same struggle.
Lisa
Lisa, I am so sorry to here you are going through this. I too was diagnosed with triple negative breast cancer at Christmas a year ago. From what I understand many people have a harder time with A/C and find the Taxol treatments to be much easier to tolerate. Denise does have some more information on Taxol on this site that I found very helpful. I will keep you in my thoughts and prayers. I finished my journey in July and I am doing very well now so I hope the same for you in the near future.
Sherri, thank you so much for your kind words. I have read all the entries and it seems that Taxol won’t be as bad. However, my surgeon told me that I’m going to feel terrible ‘go figure.’ So I’m literally in the middle, but I will know in 2 days since that is when my treatment begins.
Hope you are doing well. I just finished 12 weeks of Taxel ( sp) and an investigational drug I-Spy. After a two week break I started my first AC treatment. 3 more to go. I get a 21 day break between each dose. Thank goodness for that. It took about 6 days before I really felt human again. Never have gotten sick – just felt blah.
I have stage 2 breast cancer. Such a shock as no one in my family has ever had this. I guess it was the luck of the draw.
Praying you have a good day and you are well!
Cecilia Lester
Clester309@yahoo.com
Has anyone looked at Aldoxorubicin as an alternative to Doxorubincin? It is in Phase III studies and looks promising with a big reduction in toxicity. It I lost an aunt and father to cancer and now a friend has lung and brain cancer. I don’t wish it upon anyone.
This is the best site ever! I have triple negative BC and am awaiting results of genetic testing. I am on ACT…will have my 2nd A/C next Thursday. NOT looking forward to it. Reading others experiences and information about taxol has made me feel so much better. I will get through this. I too had the nausea, which was controlled by meds so I didnt vomit. Looking at food on tv also made me sick, up until yesterday. Baked potatoes seem to fare best. I’ve had a terrible taste in my mouth, and had a bout with constipation a few days ago. It was horrible. Trying to drink more water and I think I can stomach the prune juice now. I have experienced low back pain today…and if it continues I need to call my nurse navigator. Anyone else have back pain with a/c? It has been a week since my neulasta shot. I did have muscle aches for a couple days following it and will try the Clariton, after reading on this site. Hair hasnt fallen out yet and I am dreading it but I am prepared with a wig. Thanks Denise for the wonderful site!
Hi Lori, thanks for your nice comments. I appreciate them. Oh so glad you
have one AC behind you. Taxol will be better – it is for probably 95% of us.
Thanks for sharing what has worked for you. Good to check with nurse navigator
on back pain, but it can be caused by Neulasta. It is all hard. But you will
get through this! I can tell that you have the zeal and dedication to do it, Lori!
My best, Denise
Hi All, Thank you Denise for allowing all of us to share information here on your site. I had the 12 Taxol treatments first, and I finished my second FAC treatment last week. I also get 21 days between each treatment. For me, the first day after treatment I feel really good. I attribute this to all the steroids that are in the chemo cocktail. On the second and third day, I have felt like crap. Like the worst hang over ever. Feeding the dog or doing a few dishes is just too much work. I haven’t had nausea, just an overwhelming feeling of yuck. I consider myself lucky,though, because this only lasts about 2 days. On day 4, post treatment, I am back to feeling pretty good. I go to work and do just about everything I normally do. I am a bit more tired than usual. The Nuelesta shot that I get on the day following treatment makes my lower back sore. Ibuprofin takes care of the pain. Two more treatments, and then I am off on a new adventure of radiation. I can’t wait until it is all over, I am thankful that I am going through this in the winter. I live in Texas and the temps. in Summer are usually around 100+. I wear a wig now because I am not wanting to draw more attention to my situation. If it were Summer, it would be just too hot. We all will get through this. Stay strong and be good to yourselves. Happy Trails. Janet
Hi Janet, thanks for sharing your experiences! I wonder if you are having treatment
at MD Anderson in Houston. I know their protocol is the same as you are on 12 Taxol first
followed by FAC. I am glad you are weathering the storm fairly well. It is long and challenging.
Oh I am glad for you that it is winter for you in Texas! It is no fun wearing wigs in the heat.
You are almost through the worst part! YOU WILL DO IT! Denise
Thanks Denise. I am having treatment in Corpus Christi. I have been told that they use the same protocol as MD Anderson. I love the photo of the Northern Lights. Where was it taken?
Just wanted to thank you Denise from the bottom of my heart for this blog that I found today! I was diagnosed with triple negative stage II in September 2013. Luckily I only had a lumpectomy and 0/33 lymph nodes removed. I thought that was tough until I started the “red devil” Every side effect you described fit me to a tee. I haven’t been able to work because I am so tired all the time, joint pain, hot flashes plus I have a four year old little girl at home. I thought that I was being “wimpy” through this treatment but it really does STINK!! I guess that I’m allowed to be cranky right now and allowed to complain. I just wish more people understood that.
Luckily I can say that my A/C is done….thank goodness and two out of four Taxol treatments are done (followed by radiation.) I hope one day that I feel normal again. That will be a great day.
Thank you for letting me complain a little here and thank you for this blog. We all need to vent sometimes!!!!
Kelly Ann, thanks so much for sharing your journey with us. Thank God
you are done with A/C!! My next blog post on March 3, 2014 (Triple Negative
Breast Cancer Day) will be written by a young mom who is done with treatment
and was Trip Neg. I’m sure you will relate to her as she has a small child.
Thinking of you. IT GETS BETTER, but it takes a lot of time and patience!
My best, Denise
Denise have you or anyone experienced red, burning fingers during A/C? I have had this for a week. I think I irritated my fingers with a nail file…but not sure. And then low wbc count prevented hands to heal. Its about driving me nuts. Am calling Doc tomorrow…mentioned it last week and they told me to use lotion and watch it…but still not much better. Have my last AC treatment this Thursday and dont want to delay treatment. I have 12 weeks of taxol to follow.
a/
ctreatment this coming Thursday and do not want to delay my progress..
Hi Lori – I had red burning fingers during Taxol, not AC, but anything is possible
if you ask me! Also, it could be a steroid reaction. My face got so red during AC –
steroids. I had to call the Onc. Glad that you are calling your Doc. During Taxol my face broke out like
a teenager. They gave me a script and it helped a lot! I had a lot of red skin all through
it! Thinking of you! YOU CAN GET THROUGH THIS! We all support you!!
Well it has been 8 weeks since my double mastectomy surgery, and I am healing. Not as fast as I would like, but I am healing. They found two masses instead of one, both at 2.5cm in the right breast, but I got great news that my Lymphnodes were for all intensive purposes clear. Then I got even better news, I only need Cytoxan and Taxol, no Adriamycin! Plus I only need to recieve then infusions
every 3 weeks for 3 months!
Hi Trisha – great news about your news – and every 3 weeks an no Adriamycin is
fabulous news. You will have time to feel almost “normal” between dosages!
That really helps. You can get through it and will get through it. But it is
so darn frightening! My best, Denise
It has been 19 weeks since my last dose of Taxol. Before that I had the A/C regimen. I am starting to get some energy back. I have started back to work, and feel much better than I have since I started treatment. My hair is about 1 inch long and I really can’t wait for it to grow out. My biggest issue right now is the pain I have in my sternum and rib cage. I had a bone scan right after I finished chemo, but did not see anything. Has anyone else had this problem?
I certainly can empathise with you on the blog about whining. I too experienced everything you wrote about and only women who have experienced it, can understand it. Thank you for starting this blog, and Prayers for all who have gone through this or who is going through it now.
Hi! I was diagnosed with stage 2b triple negative with lymph node involvement in May. I had 4 doses of the Red Devil and oh the side effects! My feet swelled so badly I could barely hobble, everything tasted weird and the same, my hair came out in clumps so I shaved it all off, heart palps, neuropathy, and more! Neulasta was a nasty monster too! The muscle and bone pain were horrific! But it worked! My former 4+cm tumor shrunk down to nothing, so they immediately started me on dose dense Taxol 4 doses total. After 2 rounds, the bone pain and neuropathy were getting too severe so they dropped me to weekly doses. LAST dose next week!!! Surgery in December then 30 rounds of radiation! Hoping to be dancing with NED this time next year! Thanks ladies for all your stories!
Kelly, Congratulations with almost being done with Taxol!! And so happy to
hear your 4+cm tumor shrank down to nothing. GREAT news! That is one thing
about the Red Devil – it kills cancer in most cases! But it sure is tough.
Wishing you well, Kelly!! You can and will finish this!!
Also, anyone experience vision problems on chemo? I have shakey vision when I look at horizontal or vertical lines. I really notice it when I look at checked patterns, this vibrating shake around the perephery. Anyone else? I also found out this week chemo gave me DVT (blood clot) in my left leg. It already pushed me into diabetes (no meds needed for that yet, thank God just sugar checks) and possibly early menopause. Honestly, all worth it if I survive without a reoccurrence!
Kelly, I hear from a lot of women who have vision problems during chemo.
That’s why eye doctors don’t want you to get a new script – but it is
always wise to have things checked. I went to an eye doctor during chemo.
Oh darn about blood clot. So sorry to hear this!
I developed clogged tear ducts from Taxol three week after my last dose. It is unrelenting and is getting worse. I’m constantly wiping tears from my eyes and they are very red. I’ve been to three different opthalmologists including one at Johns Hopkins and may have to have some serious DCR surgery to correct it if the steroid drops don’t start working soon. If anyone else has suffered from this and there was a solution, I would love to hear it. At a time when I should have freedom from SE’s, this is very depressing. Thank you!
Paula, I am so very sorry. I’ve heard of quite a few other eye problems during Taxol, but
never this one. My eyes were so dry I had to quit wearing contact lenses after 35 years and
still can’t wear them 2 years later.
Perhaps someone else will chime in about this! Hope so!
God bless you Denise. My wife Vickie of 40 years recently finished the same Chemo course along with Radiation treatment on October 31st from breast cancer as well as a double mastectomy and you are so very right. Being DIAGNOSED and OVERCOMING BREAST CANCER is not easy and every patient is different. I pray for your continued physical as well as mental healing as well as all others who are going through this struggle. But as you and my wife can attest it “IS” a battle that “CAN” be won with STRENGTH, DETERMINATION and STRONG SUPPORT from loved ones as well as GOD’S DIVINE INTERVENTION so never stop praying and having others pray for you.
Keep up the good work as the battle goes to those who NEVER GIVE UP.
Roger, thanks for your kind and encouraging words. I am so happy your
wife has now completed active treatment. You are so right —
prayer is so important! Your words are important for women to hear.
I know your wife was blessed to have you by her side supporting her.
I wish everyone had someone like you to cheer them on!
Dear Denise… Thank you so much for posting this. I am about to start my Dose Dense A/C on Tuesday. I have been able to push the thoughts to the back of my mind for months now, yet at the time approaches, I find myself quite scared. I think that is what the random bouts of crying are all about. Your post was very helpful…scary, but helpful. Many people suggest it may not be so bad and that I should not expect it to be…or for sure it will be. I am not normally a negative person, however I am realistic. I have been “realistic” about this situation since I first discovered the tumor in early January. If anything, I have only ever under estimated the seriousness. I feel kind of like I have been selected for a 4 month beating that will be severe, however it won’t kill me and when it is over, hopefully I won’t need any more beatings. I understand the wonderful benefits to it all…yet it still seems so frightening to think that today I am a healthy 46 year old woman who can run 3 miles and beat my 17 year old son at racquetball, and next week not so much. For me, It is good to know what to expect…and to expect the worse, and maybe have it not quite as bad as expected, than it is for me to hope for the best and find out that it is much worse. Thank you for the candid blog post. While I am going through it, I plan to blog about it as well. One, to give me a place to “whine” freely, and two…to validate and help others who are doing the same. I wish you all the best!
Thank you Denise for writing this. I just finished my last round of AC yesterday now lying in bed waiting for the final side effects to hit me. In 2 weeks I will start 12 weeks of Taxol. My doc told me that I was in that 5% that were miserable with this regime. I attribute it to 1. Don’t drink alcohol 2. Had hypermedia gravitating with my 2 pregnancies 3. Don’t tolerate anesthesia week at all 4. Don’t take any mess/drug 5. Am a redhead. I pray that the weekly Tacol will will allow me to get back to my old self an ill be able to work! Again thank you for posting your experience cause went through the exact same thing…hope you are feeling well!!
I was diagnosed with tnbc end of January 2015 stage 2A.
I have finished 4 dence dos see AC and today had my 2nd taxol dence dos in 2 weeks will have my 3rd and finish end of June. AC left me 20lbs lighter as I found it hard to eat with the metal cardboard taste. I had extream fatigue for 2-3 days with each treatment. My eyes watered constantly and so did my nose.
With the taxol I have been feeling less tired. I do have horrid bone and muscle pain that starts on day 3after treatment and is lasting about 3-4 days. I have been able to work full time through it all so far, I am an assistant manager at walmart so at times it is very rough.
I am not sure yet if I will have a lumpectomy or mastectomy. I meet with a breast surgeon after my last treatment. Then will fallow up with 6 weeks of radiation. This does tke everything you have to fight. I am trying to stay p Positive but it is hard and sometimes you need to vent, scream, and cry.do it!
PRAYING FOR ALL OF YOU,,,,,,,
What a great read, I have spent over an hour reading the post and replies and it is amazing to hear what everyone is going through and how strong you all are.
My partner is 30 and fighting stage III triple negative invasive ductile carcinoma. She just had her fourth and last round of A/C last week, and will start 12 weekly rounds of Taxol next week… and she is a total rockstar! Though I am seeing her symptoms daily, all of you have helped me to better understand what she is going through. Every little bit of info I can get helps me to better help her… So I am a sponge!
I just want you all to know how much I admire each and every one of you! Thank you!!!
…and yes, keep calm and WHINE ON!
Reading over these responses brought tears to my eyes. I remember all too well how I felt during my experience with adriamycin and cytoxan. I remember being so weak and sick that I crawled on my knees to the toilet. I remember throwing up so hard and frequently that after my fourth treatment, I was throwing up blood. I remember telling my husband that I was so tired, I was being exhausted at the cellular level. Some days I struggled to rise from bed to greet the children when they got home from school. I hate that with as many advances as have been made in the treatment of cancer, we are still using this poison to treat cancer. Yes, we got through it. My hair grew back; I eventually stopped throwing up; and I am now 13 years cancer free.
I’m starting a/c within the next two weeks. The original drug they tried me on was doxil which I had a life threatening allergic reaction to. It was explained to me as the most mild form of chemo and I only needed it once a month. Now they are going to start me on a/c… which my understanding is that it is a much stronger drug with more serious and permanent side effects, and instead of the doxil once a month… the a/c will be administered through a medaport once a week for three weeks, then two weeks off…. and the rotation continues… I don’t know how my body will react, since I’m still adjusting from a permanent ileostomy that I got back in March 2015. Any advice? I’m not going to lie…. I have had many surgeries and I am now 27 years old with a 14 month old…. and the thought of chemo scares the hell out of me!
Ashley, AC is a tough drug – you have youth on your side — have you talked
to your Oncologist to see if any other drug will work? I went through AC –
my sister just had AC #4 today — we survived!! One thing it does is kill
cancer. Chemo is scary, but you can do it!! Sending my best, Denise
You described perfectly what I have experienced. I just completed my 4 th AC treatment for stage 3 invasive lobular carcinoma. I hope the 12 weeks of taxol chemotherapy won’t be as bad.
Gail – congratulations on being DONE! You will never forget it, but the memories
will fade a little! Taxol will be better – at least it is for about 99% of the
women I hear from regularly! My sister also just had AC #4 – she starts Taxol
this Tuesday (July 28, 2015). It’s been a rough road for her too! Sending my best wishes!
OMG. Thank you for posting this. I thought I was losing my mind. I have had 3 AC chemo treatments and this last one really kicked me in the butt. I have never felt so tired and sick in my life. I was sitting here crying because I felt so bad and did not know how I could go through my last treatment in 17 days. I feel like people are looking at me as if I am faking it or just trying to avoid going to work. I really do not know how I would be able to stay focused work due to the constant feeling of being sick. I just keep breathing and telling myself that I only have one more of the AC treatments before I start the next 4 treatments of Taxol, Projeta and Herceptin treatments 21 days apart. Thank you so much.
Kelly, you are not losing your mind (except chemo brain!) I’ve heard from hundreds if not thousands of women going through A/C. Most say #3 is the worst. My sister just went through A/C and was unable to go to work. She has been working all through Taxol 6 hrs per day. I was not able to work through A/C. One of my blog readers called A/C “legalized torture.” That is a good description!! Just concentrate on getting through an hour or even a minute at a time. You feel so alone during it because no one understands unless they have been there. We all have. We understand!! You can make it!!
I was 21 years free of breast cancer after having a lumpectomy, chemo and radiation in 1994.
This early summer I started seeing color and skin changes in my breast . After a mammogram, ultrasound and guided core needle biopsy, I got the bad news. I have an inflammatory breast cancer in the same breast. As all of you may or may not know it seems to take an eternity to get things rolling. Because of the size of my tumor my surgeon did not feel comfortable removing the breast. So here I am now on the A/C infusion. Which I receive every other week for , four treatments. I am 66 so I have not had to go through the hot flashes that Denise had to go through. I got to doe that one on Methotrexate and cytoxan years ago. Horrible experience at 45 years old.
I am so sorry that you and other women have had to go through all of the terrible side effects that you have had..
I have had a few of them but was able to get through it. Maybe because there are better drugs to combat the side effects. I have one more treatment before starting the Taxol. That will be for the 12 weeks once a week. It is kind of strange but, I hated losing my hair worse than the upcoming mastectomy. Let you know How I feel about that latter. My Doctor is going to have a ultrasound done after this next A/C treatment to gage the size of the tumor. If it is smaller enough I may be able to have my surgery befor the Taxol treatment. I hope so as I am so afraid that this will start spreading itself around to other places.
Thank you so much. I relate to your experience to a tee. I went through A/C, now 10 rounds of Taxol, just finished my 2nd. I am weak, tired, low energy different then when i was on A/C, mouth sores, thrush. Headache is my problem, that isn’t eased up much. I let my mind run into too many derections. I have much faith in my dr, but, can’t help wonder is there long term effects. My 3rd and 4th day seemed to be the worst.
Thank you for putting your experience out there. It helps. Breast cancer is wicked, as well as the drugs to save your life. We will make it. Whine on!!!😊
Thank you so much. I relate to your experience to a tee. I went through A/C, now 10 rounds of Taxol, just finished my 2nd. I am weak, tired, low energy different then when i was on A/C, mouth sores, thrush. Headache is my problem, that isn’t eased up much. I let my mind run into too many derections. I have much faith in my dr, but, can’t help wonder is there long term effects. My 3rd and 4th day seemed to be the worst. I also have heart palpatations. My dr, is sending me to a cardiologist, but, can’t get in right away. I will almost through my Taxol, if all goes plan, and my blood counts are normal..
Thank you for putting your experience out there. It helps. Breast cancer is wicked, as well as the drugs to save your life. We will make it. Whine on!!!😊
Nancy, thanks so much for writing. I am glad you are through AC. It is all one tough ride.
My sister finished chemo in October, 2015 and has 10 more rads to go. Anything I forgot from
my experience, I remembered once again through her!
So glad you are getting your heart checked. I had a heart attack during AC and never knew it
until months later. I thought it was side effects. So glad you are going, but sure sorry you
have to wait! If you haven’t had an ECHO, make sure they give you one!
Wishing you the best. I promise it will get better!! Denise
Denise, Thanks so much for sharing your experience, with this battle we share. You are the only person that of many people, that I can relate to all your side effects. It really hit home. I am 58, my energy level seems so low this time around. Even though, they said the Taxol was less aggressive. I am surprised at how many people can go on with there daily lives. I am fortunate to be with a man, that has been to every appointment. I am blessed, in that sense. I do worry about long term effects. I am healthy for the most part. I use to be a hairdresser, but, deal with bad knees, one replaced and degenerative disc disease. But, I manage. The best of luck to you and thank you for taking the time to reply. A new friend, Nancy
Happy Connecting. Sent from my Sprint Samsung Galaxy S® 5 Sport
I can’t stop re-reading this post – I could have written it myself – you’ve described pretty much every symptoms and side effect I’m having word for word. Yet there is such a lack of compassion and empathy from so many. I think in the main, people think chemo might make you throw up and lose your hair – and ‘that’s all’. As much as I hate that you had to go through this too, I’m grateful to read about someone else who ‘gets it’ – thank you.
My experience has been very similar . The literature and information I received from the oncologist did not warn me of this kind of reaction! I’m grateful to these blogs that have described a realistic reaction like mine
Oh Robin, I am so sorry. You are right – the brochures just do not adequately describe the
reactions for some people. Some people make it through much easier! And remember – going through
AC you just feel like dying, but during Taxol or the next drug, you feel like living. Big difference.
YOU CAN MAKE IT THROUGH!! My best, Denise
I have read all of the remarks on this page and am so glad that I did, I have been thinking often of stopping my chemo as it is so hard, I am not a wimp by any means, I have been 33 years in law-enforcement and have taken care of my handicap husband for 30 years, but this !!! I was told I had stage one invasive ducal carcinoma, with positive HER2 and positive on my progesterone and estrogen, after the mastectomy and removal of my lymph node (both were clear) I was told I was cancer free—but here I am on AC and having horrible side effects, I am not one to throw in the towel but this is more than I bargained for- the nurses reprimand me for the large weight lost but just looking at food makes me sick, the smell is twice as bad, I am so tired and confused it is hard to take care of my husband, I have two more to go (21 day) and having a hard time making myself go to the 3rd–both my sister-in-laws brag they didn’t have the stomach problem don’t understand my failing–neither had the Aureomycin–I am so glad I am not whining just protesting, I hope the Taxol will be better heart and stomach wise–thank you!!
I hope you carried on with your treatment, Sandy, and you should have finished it by now. You are not your sister’s-in-law and they should have a bit more compassion and understanding.
I found the Taxol to be not as bad as the AC but not good. Set your sights on the end goal. The treatment will end!
You are not alone in your suffering, you have many sisters around the world who understand what you are going through! I think it helps when you know you are not alone.
When it comes to food, all I wanted to eat was potato. I lost quite a bit of weight after my op, but was not nagged at for it, so am happy. I don’t look like a skeleton. I look healthy and fit. I had been trying to lose weight but it just would not shift before my op, no matter what I did. Now I am at a good weight. Not skinny, but not the tub of lard I felt like before my op!!
You are not whining and neither was Denise. You are simple explaining that it is flipping hard to go through!
Good luck!
Your story really made me laugh, Denise! It was a mirror image of my own experience with ‘the red devil’, apart from the hemorrhoids!
I am English but received my treatment for breast cancer in Shumen, Bulgaria. I had my right side mastectomy in the main hospital and had a balcony and a wonderful view on the 8th floor but was there for a month as the fluid just kept coming via the drain in my armpit! (When I was admitted, a nurse, who had a terrible limp, carried my bag to my room. My husband tried to take the bag from her, as she was obviously struggling, so she slapped him!!)
I was then referred on to the purpose-built Oncology Unit. The staff at both places were all wonderful despite the language barrier, but you do wonder why you are putting yourself through it, at times, when you know your mouth is going to be painful and raw minutes after the AC has been administered. I found fresh orange juice helped with that as it appears to be a form of scurvy!
My treatment ended 6 mths ago but the side effects linger on. I still get attacks of ‘chemo brain’, ‘metal mouth’, etc., but it is lessening and my bloods are almost normal again. Was so glad to read your comment that it goes on for two years. I thought I was going crazy as the ‘professional’ info I have read say side effects stop as soon as chemo stops.
A friend of mine is currently having the AC at the same place that I attended and she is breezing through it while another friend, who is also receiving AC, is having a terrible time, far worse than what I experienced.
When I had my radiotherapy the radiologist drew on my chest and told me not to wash the area as the marks were important for correct treatment. I was sweating that much after the AC that I sweated the marks off and got told off! Later on, my skin started to burn with the treatment. The marked skin just fell of one night! I was mortified! Fortunately they were very understanding and had to re-calibrate me anyway!
I then went on to Taxol and had to stay in hospital for three days during each treatment. I got side effects with that. I suffer allergies and Taxol makes them worse, apparently.
As someone else stated, all I want to eat is potato.
I am now out the other side and am happy to be alive. The treatment is ‘legalized torture’ and is horrible to go through, but it says a lot about us that we keep on keeping on! Also, I have some really lovely memories of my treatment and experience.
Losing your hair is the easy bit of treatment. There is something liberating about wiping your head with a wet wipe and declaring your ‘hair’ washed!!
It is to be hoped that your ‘friend’ never has to go through the experience. I am sure her whining would be far worse than yours and I would be willing to bet that you didn’t tell her the half of it.
Thank you for sharing your experiences. They have certainly made me feel much better and more ‘normal’!
Good luck, to everyone who has been through it, is going through it, will go through it!
Hi Jackie, thank you so much for sharing your experiences. It was fascinating about being in Bulgaria and receiving treatment. There is an even greater sense of “sisterhood” across the world! I am so glad you are done!!
My sister also finished chemo 6 months ago. She is doing well, but no where near “normal” as you well know! I big turn happened for me at 12 to 13 months and another at 2 years!
It is amazing how each woman is different with AC. I have a friend who breezed through AC but is having a terrible time with Taxol.
And yes, Taxol is highly allergenic. I became allergic to wheat/gluten and dairy during Taxol and those allergies remain! I hear from many other women who have the same issues!
Sending my best to you and your friends who are enduring! My best wishes, Denise
Thank you, Denise! What amazes me is how many people are going down with cancer.
I am part of a small group of ex-pats in the Varna area of Bulgaria. In a short space of time (just over a year) 4 women went down with breast cancer and a man has gone down with leukemia. 3 of the women were in hospital for a week. The 4th, me, was in for a month! The poor man has been in for about 2 months and has been seriously ill. He is in early stage leukemia. Can you imagine if he was in late stage?
A couple of friends in England have also gone down with different forms of cancer, recently. It is a ridiculous amount of people.
Glad your sister is doing ok, even if she isn’t ‘normal’ yet!
Because Taxol is highly allergenic, I was given an anti-allergy shot a day while I was in hospital for the 3 days. My skin would be fabulously clear for about 6 days and would then start with the contact dermatitis again!
This site gives so much hope and understanding. I have to say that I did laugh at many of the stories. Not because they are funny, but because I could identify with them and felt such a sense of release! Like Maziel’s story of the fluid. This happened to me, without the infection, but not to any one else that I know, so I did laugh! It was a ‘Yeay! I am not alone!’ moment!
Reading the ‘professional’ stuff makes you feel like there is something wrong with you as you are not conforming to ‘their’ norm. Makes you wonder if they actually listen to what the patient says.
My current specialist wants to know why I do not speak French as my name is French and he can speak French! My Bulgarian is not very good but we get there in the end!
I have to say that I do look forward to my hospital visits as they are always a joy! The staff are so caring and so happy to be looking after you. On one visit to the blood lab I was struggling to make myself understood, the staff were looking at me and laughing. I found it very disturbing and was close to tears, via chemo! They realized how I felt and the blood doctor looked me in the eye and said, ‘I speak English!’ I could have slapped him! Especially as I had used phrases like, ‘Oh, bugger! What is the word?’!!
We all need to share our stories so that others who are afflicted can see that they are not alone and are not odd for not conforming to the ‘norm’.
Best wishes to you and yours, Jackie xx
I know I am late to comment, but I had A/C for stage 3b breast cancer during July and August, 2013.
I am alive and the cancer is gone but I am not sure I could do it again. In addition to every symptom you listed, I developed lesions in my rectum that made bowel movements excruciating from pain and burning. Naturally, my body decided that constipation was preferable. Nitroglycerin suppositories and Desitin made it somewhat tolerable, but then there were new side effects from the suppositories.
I am praying for you and your sister.
I finished 3 cycles that included in the last 2 cycles, the dreaded red devil. I ended up being hospitalized both times, the last time for 6 days & in ICU for much of it. My condition was called life threatening more than I liked to hear – my blood pressure (which is normally on the high side) had plunged to near comatose levels. Systolic was 37 when I was admitted. I also contracted C-diff from all the antibiotics they pumped into me & have to take a specific antibiotic for a total of 28 days. I can’t even think about chemo until I finish the antibiotics & while the oncologist feels it is most likely the culprit is the Adriamycin, it could be the other drugs and she said I might want to consider skipping the last 3 cycles and move on to radiation. I applaud all of you who have made it through your chemo. I am so very depressed that I appear to be a chemo loser & that I will disappoint my family if I give up even without the Adriamycin. Truth is, the ‘life threatening’ business scared the crap out of me … what if it happens again & I don’t get to the hospital in time? Has anyone else had a similar experience?
PAM, I AM SO SORRY – yes, certainly have heard of women in your same predicament.
Is Taxol an option rather than Adriamycin? You could always get a second opinion
about this. My sister’s blood pressure also plummeted but not nearly as bad as yours.
It is a serious drug – I know people who have died from it, so you are right to be alarmed
after your initial experience.
I’ve had 2 treatments of red devil with not one side effect. Have 2 more to go. Can’t wait to be done and back to my old self. I feel very fortunate. I still have to get reconstruction finished. Starting fills Monday. Good luck to all of u. Hope you feel better soon!
Gosh, how fortunate you are, Adrienne. I’ve never heard of anyone without one
side effect from red devil. Wow! Amazing!! Good luck to you during reconstruction
and I hope the no side effects continue!
Tnk you tnk you tnk you. At last I found someone I can relate to. Will light a candle for you both Ann B Ireland
Thanks, Ann. Wishing you nothing but the BEST! Denise
Hi there… here in my jammies over chemo six weeks they had to stop it ie taxol after the AC as i have fliud on heart and my poor old body cant take anymore. Nails went puss filled and fell off. Bloated due to steroids. Feeling very crap n tired.
Hope 2017 is my year have to sell house as i can’t make repayments. God knows where i am going to end up. I get a little comfort from your blog entries . I know have one wish that I truly want all of our sisters going thru the same and that is peace of mind more good days than bad. I hope other people will and try to understand that we are not moaning just for the sake of it, we truly are feeling s*it and need you to be in our corner. I want all my cancer sisters to have the most amazing New Year!
Oh, I am so sorry you have had all of those terrible side effects. It is all so difficult and beyond challenging.
And no one tells you about the financial strain cancer has on you!
God does know where you are going to end up – prayers for you.
And thanks for your good New Year wishes! Sending all my best and a virtual hug!
I’m reading this as I finish my final AC dose. I just wanted to that that this was exactly my experience, and your post reflects my headspace and mindset via this whole thing. Felt like a breath of fresh air. Thanks for posting.
I really appreciated reading this. I’m going through your exact regimen, with one more A/C to go and then 12 weeks of Taxol. Stage three, yada yada yada. I so appreciated your article. It is wonderful to hear that someone understands. Thank you.