Side effects of Taxol Chemotherapy during Breast Cancer

Taxol or Paclitaxel    http://en.wikipedia.org/wiki/Paclitaxel  has been far kinder to me than Adriamycin and Cytoxan Chemotherapy. There are several ways Taxol can be administered - 12 weekly infusions, 6 every other week infusions, or 4 infusions every three weeks.  I have received Taxol on a weekly basis for 12 weeks.   But Taxol is still very challenging.  The difference for me has been during Adriamycin and Cytoxan, I felt like I wanted to die.  During Taxol, I feel like I am starting to come back to life and want to live.  That is a HUGE difference.

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But Taxol isn’t without its difficulties and many inconveniences.  The first thing that is a major concern, is that many people have allergic reactions to Taxol during infusion.  Most Chemo Nurses have told me that if this is going to happen, it normally happens within the first few minutes of infusion.  During infusion, they give you Taxol slowly to see if you have a reaction.  If so, the chemo drugs may have to be changed, or more anti-allergy drugs such as Benadryl are given.

These are my experiences of the side effects of Taxol.  Everyone is different.  If I had to compare my side effects to other women I discuss things with on the Breast Cancer Discussion Boards, I would say I am somewhere in the middle.

1. Extreme fatigue.  Since I am receiving weekly Taxol, I have two days that are really heavy fatigue that I have to just go to bed.  It just hits me suddenly and boom,  I have to lie down.  I cannot function.  Since Taxol is cumulative, in these later weeks, the fatigue is more pronounced.  In the later weeks, by 5 pm I just want to lie down.  I rarely nap, but just have to rest.   In the mornings, I have quite a bit of energy.  Learning to plan your life around it helps tremendously.

2.  Bone pain is another extreme side effect.  The first few weeks, I had very little bone pain, but kept reading on the Breast Cancer Discussion Boards about the severe pain alot of women were dealing with on Taxol.  One night it hit me.  WOW, suddenly I understood their complaints.   I found myself writhing in pain.  After 800 mg of Motrin, it calmed down slightly, but it lasted for several days.  Many people have good results on reduced bone pain by taking over-the-counter Claritin.  Make sure you ask your Oncologist about Claritin before you take it!

3.  Allergies – I have had this very annoying but rather rare side effect.  I have developed allergies to numerous things I was never allergic to before Chemotherapy.  This can be a result of the Taxol or my compromised immune system.  I developed a very severe cough, sinus problems and allergy symptoms.  I am now allergic to my cat, wheat and gluten, and many unknown other allergens.  Hopefully, this will go away eventually, and has dramatically subsided since I have cut out wheat and gluten in my diet.  It has been like having a severe cold for 12 weeks.  Once I got the coughing under control, I have more energy too.  But I repeat, this is very rare.  My Oncologist says he rarely sees it.  Update:  I am now several months post Chemo and my allergies are finally subsiding!

4.  Bloody Noses – Never having had a bloody nose in my life, this has been a little disconcerting.  But I’ve gotten used to it.  It happens daily from the dryness of your sinuses from Taxol, mostly in the mornings.  It is not a frightening kind of bleeding that you think you have to go to the Emergency Room, rather a consistent, annoying, sinus drainage that contains blood and clots.

5.  Racing Heart – My heart rate went up to 125 bpm on the first week of Taxol.  By Week 7 it was down to 103 bpm and hopefully will keep going down.  Last night it was in the low 90s.

6.  Neuropathy – The first week I had terrible neuropathy in my hands and feet, and had difficulties walking.   But as the weeks progressed, it has been less of a problem for me.  Some women have severe neuropathy that can be permanent.  Others have very mild neuropathy that goes away quickly after Taxol stops.

7.  Fingernails and Toenails can discolor and/or fall off.  Icing your hands and feet during the Taxol Infusion can prevent this.  I can attest to this.  I take two small dishpans to infusion.  When the Chemo Nurse begins the Taxol, I have her fill up the dishpans with ice, then I soak my hands and feet in them as long as I can tolerate it.   I keep pulling them in and out of the ice for short breaks.  It is annoying to have to do this, but it really works.  I have had absolutely no nail trouble.  Plus, I haven’t had long-term neuropathy.  My Chemo Nurse said fingers and toes have twice the circulation as other places in your body, so by icing them, it constricts the blood vessels and prevents the Chemo from infiltrating those areas. I would highly recommend you ask your Oncologist about this.  Some Chemo Centers provide Cold Gloves for this.  Here is my post about icing during Taxol:   http://denise4health.wordpress.com/2013/04/18/icing-hands-and-feet-during-paclitaxel-taxol-and-docetaxel-taxotere/

8.  Low blood counts – I have been keeping steady but low blood counts.  Fortunately, I have not needed a transfusion or Neulasta shot.  But as a result of low blood counts, I have avoided crowds and social events.   If I go to the grocery store, I wear a mask and shop early in the morning before the crowds.    It is very isolating, but necessary to do so.   I wash my hands constantly and use hand sanitizer as well.    I have gone to a restaurant just a few times, but I have gone off hours and asked to be put in a secluded area.  It is worth the sacrifice, as I have not gotten sick.

Those are the side effects that I have had which are far less than some people and for that I am so grateful.  The biggest lesson I have had to learn with Taxol is not to push myself too hard on the good days. My really good days are the first two days after infusion because I have the “steroid high.”   I do have to pace myself and make myself slow down, because on those days I could really go non-stop.  But then the crash does come.

If you are about to undergo Taxol Chemotherapy, it is far more tolerable for most people.   Nausea has not been an issue at all, which has been a welcome break!   The weekly infusions have really flown by and gone much more quickly than I anticipated.  If you have a choice over weekly, bi-weekly or every 3 weeks, I do recommend the weekly because many Chemo Nurses have told me the side effects are alot less.  It can be challenging to get there weekly, but like everything else with Breast Cancer, you adjust and it becomes your life.  Plus, the 12 weeks truly fly by as it seems like you are at infusion all the time!    All things into consideration, to me Taxol has been very tolerable but as I stated previously, inconvenient and annoying!  But since it is saving my life, I can handle those things! So can you!   Be encouraged – you can do it!

UPDATE:  I just finished Taxol Chemotherapy.  The only other side effect I had in addition to the above is altered taste during the last 3 weeks of Taxol.  Everything kind of tastes like slightly metallic cardboard – but if you add more spices and flavoring, it tastes better.  I did stay away from tomato sauces, however, because on a few occasions I had some heartburn which I never had before, so I am assuming it is from Taxol.  Taking a Tums took care of it.  It was not severe. 

UPDATE 2:  14 weeks post Taxol.  Have slight numbness and neuropathy in toes of right foot, have some muscle pain, but it is slowly subsiding.  Other than that, feel really good.  Hair is about 1 inch long and growing!  Hooray! 

UPDATE 3:   21 weeks from last Taxol.  Still have some very minor neuropathy in the end of 4 toes.  Some joint pain and muscle aches, but overall feel really good.  Hair is nearing 2 inches long!

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156 thoughts on “Side effects of Taxol Chemotherapy during Breast Cancer

  1. Denise, First let me say I wish you the best and hope you are well. I have stage 2 breast cancer and hace just finished A/C. I begin Taxol next week ughhhhhh!

    • Hi Diana, I pray all is well and by now you have completed your treatments; I have Stage 1 Breast Cancer and have just completed my 4 sessions of AC and had my first Taxol/Herceptin w/o pain meds!!! HELP PLEASE!!!!

      • Hello to both of you (Diana and Renne) I hope this message finds both of you in good spirits. I’m about to start Paclitaxel April24th, 2013. I haven’t seen any replies regarding your questions/concerns…did they ever come? Praying for your complete recovery.

        Veronica

    • I seem to be on a close to the same schedule as you. I, to have been diagnosed with Stage 2A. I finished my A/C on June 27th. I have two more Taxol/Herceptin. Cannot wait. Keep fighting. Good luck and I hope your Taxol treatments went well.

      • Hi, Kelly. I hope everything has gone OK with your Taxol/Herceptin. Keep your spirits high and your mind busy with other things. That’s the best way to fight once you’ve finished treatments. I had cancer in one breast 28 years ago, I nearly forgot about it, and only last year (imagine, 27 years difference!!) I had a new cancer, stage IIB, in the other breast. I started AC in February and then had Paclitaxel for 12 weeks. I finished a month ago, and now I’m very busy with lots of other things.

      • Hi, Julieta, Thank you for your kind words. Good luck to you. I am sorry you had to go through it again, but I am very happy to hear you are on the road to kicking butt again.

  2. Diana, having the A/C behind you is worth celebrating! Taxol isn’t pleasant, but so much more tolerable than A/C. My thoughts and prayers are with you!

  3. My wife had her first Taxol treatment last week on Thurs via I/P. Within 2 hours she began to get red as with a sunburn and joint pain. Within 2 more days the burning an itching began to get intolerable.. Contacted the Dr. and was told it would likely disappear in a couple of days(3 – 5 days) after treatment. Did not happen and got an apptmt on Wednesday, 5/23. Dr. prescribed a steroid treatment.Slow to improve so far, 5/25. Next infusion scheduled for 5/31. Hoping another option of treatment is available. It seems to be something called Taxotere. We are hoping for the best. Thanks and best of luck to all who have shared their experinces

    • So sorry to hear about your wife’s allergic reaction. I know many women are allergic to Taxol.
      Many women do get changed to Taxotere and have no problems or Abraxane as well. My chemo nurses
      said reactions to Taxol do happen quite often – it is not rare. Chemo is horrible enough without
      reactions. My very best to you and your wife.

  4. Denise, I also just finished my A/C, and begone the T this week. So, far so good! Just take it easy, because as we all know if we do to much and you think your are wonder woman it will come to haunt you. Good luck with the “T” I hear it’s not bad at all. How many treatments do you have to contend with? I have 3 more left and going every other week.

  5. I had my first T this morning. Before treatment, they had me take Steroid pills at midnight and then again at 6am. My treatment was at 9:30am, they gave me Benardyl through the iv and then some anit nausea, finally the 3 hours of T. Feel good just tired out, wondering what tomorrow will be like..but I know for sure a Positive attitude does wonders

    I had 4 round of the Ac along with something else..had to shrink my tumor first. On June 21st I had a doube Masectomy with expanderes put it. I am tripple negative and need to also have 5 to 7 weeks of Radiation. One day at a time!

    • Hi Maureen, it really is one day at a time. It is so challenging, but you can
      do it! Good for you for getting through A/C. I had my mastectomy first, then
      chemo then radiation. Just finished Radiation a week ago. Wishing you the best
      through Taxol. I hope you find it easier!

    • I had my first (of 4) T treatment today. I also was infused with Benadryl prior and then 3 hours of T. LONG DAY! I was not though administered steriods prior. I just assumed they were in the iv – I will ask the nurse next time. I go every 2 weeks. I also had 4 rounds of A/C, and I am very relieved to have that behind me. I had moderate side effects – thankfully nothing dramatic. More queasiness than nausea, constipation, bad taste in mouth – it was nasty but doable I guess is the best way to put it.

      My cancer was in my left breast but I opted for a double masectomy with immediate reconstruction too. I have the expanders in and they will stay in until after all treatments. I also have to have radiation, but I have not yet been told how many weeks. So, I am hoping after the holidays I will be able to begin the next process of the plastic surgery. It’s 5:30 am and I am wondering like you did “what tomorrow will be like” . . . how did you make out?

      • Hi Carol, will be thinking of you and hoping your Taxol go well.
        You have made it through the worst of it being done with A/C!
        Hooray!
        Thoughts and prayers are with you! Denise

      • Carol,

        I am getting the same treatments as you..how many days of radiation did you end up getting..or are getting? They think I wil have 30. What stage were you and what grade?? I am a grade 3 and IDC so. I am concerned that I just had a lumpectomy…any thoughts might help! Thanks!
        Dale

      • Did the radiation cause any problems with your reconstruction surgery? I am undergoing chemo at this time for invasive, stage 3 lobular breast cancer in left breast. The next step is mastectomy and then radiation. I have been told that the skin can be damaged from radiation and my sabotage the reconstruction.

      • Hi Alice – I had radiation but did not have reconstructive surgery as yet.
        From what I have heard, it can complicate the surgery process but I don’t
        have any facts about this. Perhaps someone else can answer this question
        more effectively. Denise

  6. Thanks Denise..today feeling those effects from the steroids. Not always a fun thing. Glad to hear you are done with Radiation, how many treatments did you have? Did you have any problems? How does it feel to be done with your treatment..thanks for your support, I am happy that I found your blog.

  7. Stumbled on your blog as I’m still wide awake from treatment today … gotta love those steroids, haha. But today is a good day … I finished my 12th and final Taxol treatment, after 4 A/C treatments prior to Taxol. My mastectomy is about 3-1/2 weeks away, so I enjoyed your post about that as well. Will keep your blog bookmarked. Thanks so much.

    • Lisa, congratulations on finishing Chemo! What a HUGE MILESTONE!
      Oh those steroid sleepless nights! If I can be of any assistance
      through surgery, I would be happy to help answer any questions.
      If you made it through Chemo, you can do anything!

  8. Today is my first day of taxol. Kinda scared what to expect. I had 4 of the AC treatments, Each day is as surprise. You are in my prayers.
    Deb

    • That first day of Taxol is scarey. If you are going to have any allergic reaction, it usually
      happens within minutes according to my chemo nurse. You will feel so much better than A/C!!
      It isn’t without its side effects, but they are easier. Good luck to you, Deb!

  9. Had a double mastectomy in June (stage 3A), followed by A/C (4 infusions). I’ve been very lucky to escape most of the really debilitating side effects of both A/C and Taxol. Had the usual–insomnia, low blood counts, etc.–but can’t complain so far. Coming up to #10 of 12 infusions of Taxol and just developed some neuropathy in my left hand and forearm, none on the right. Scared me to death…was ready to go to the emergency room for heart trouble! Luckily, my doctor put my mind at ease, and he recommended that I take extra vitamin B complex. Have a pinkish discoloration in my nail beds along with some misshapen nails. Also my nails are tender. Thanks for the icewater tip – will try it next time. I’ll be SO GLAD when this series is over! Then on to radiation, which everyone says is a “piece of cake.” Am very glad I found your website…MANY THANKS and admiration come to you!

  10. Hi Denise . very nice to see your blog . I underwent mastectomy followed by 10 weeks of Taxol . I have 2 still to go but I have lots of pain in my body with lots of water retention added 6 kgs of weight . Do have any suggestion for that ?

    am staying positive taking care of my blood count . My next chemo is on 12/7

  11. I had Stage III breast cancer in 2005. Had 8 rounds of a/c, taxol, & 2 others. It was followed by 42 rounds of radiation. Treated aggressively because 18 of 20 lymph nodes were positive. Has come back in my bone marrow. Had my 1 of 12 Taxol treatment yesterday with no complications. Seems my emotions are much more on edge than before, but I know a positive attitude is one of the most important aspects of cancer. Hair loss is another aspect that seems tougher this time.

    • Hi Pat, I am so sorry you have to go through this again. My thoughts and prayers are
      with you. Sometimes a positive attitude is just being able to get out of bed!!
      Thank you for sharing your story with us. Hugs, Denise

  12. Just had my first Taxol infusion yesterday and had an allergic reaction. Glad to find your blog before I see the dr today for my neulasta shot. Actually sailed pretty well thru C/a with just some minor nausea til the end. Taxol not starting well! But just 3 to go if I survive the allergy and anxiety about it! Thanks for the tips- I get more help from patients than busy dr offices.

    • Hi Bonnie, so sorry you had the reaction to Taxol. It seems the women who go through A/C with not
      too much fanfare have more trouble with Taxol and vice versa. I am glad you are talking to your
      Oncologist about it. Yes, we definitely learn more from others about the day-to-day life of
      Chemotherapy than from the doctors. I am glad I can be of help…any questions, just email me
      at b4Denise@hotmail.com

  13. Hi Ladies, my name is Lynda and I will soon begin Taxol treatment for my breast cancer which is end stage. Each and every one of you are so brave and have so much courage. I admire your hope and true spirit. God Bless you all. Lynda

  14. Finishing AC this Friday….then4treatments of. Taxol…AC went fairly well, but Dr tried taxotere with cytoxan first and I had a VERY severe back and blood pressure reaction to it….so it was stopped. Now I am very nervous about the Taxol….anybody out there react to Taxotere but not Taxol???

    • Hi, I have had many blog readers have a reaction to Taxotere and not Taxol and vice versa.
      They will watch you very closely with the Taxol, but it is still very frightening on the
      first day of treatment. My chemo nurse told me if a reaction is to occur, it usually happens
      with the first 10 minutes. Congratulations on getting the last AC this Friday! Denise

      • Thanks so much Denise! Your blog is wonderful…inspiring and informative…just read more on Taxol…..it’s what they put with it..the castor oil derivative that seems to cause reactions….and of course I am allergic to cyclosporines..Ceclor anyway….what is the thought on the Claritin???

      • My Oncologist said they don’t know why Claritin helps with bone pain, but it does.
        He said, “It can’t hurt, so try it.” I did, and was glad I did. It helped me
        a lot! Best of luck to you. Thanks for your kind words! Denise

  15. Well now i know why i’m having knee pain, was really bothering me this morning on my way to my 4th Taxol treatment, i go every week for 12 weeks and then i have 4 treatments of A/C which i’m really nervous about taking. I haven’t had to many side effects yet from Taxol. I’ve heard the A/C is much worse, if so what are the side effects? Finished 4th weekly treatment of Taxol and still have my hair, will it start to fall out? They reversed my treatments due to my double mastectomy followed with reconstruction in the same surgery, which i had Nov 15th and starting to feel better from that. Sorry for all the questions but i think its better to ask someone who has been there.

  16. I completed 4 infusions of AC last week..staring Taxol next week…the AC was not bad at all….nurses deliver it through your IV or port….3large syringes and they are very careful…side effects were minimal ….with the Dex and Emend?…but lots of insomnia….otherwise it was ok….did knock out my white blood cells though…I got shots of Neupogen each time for seven days after….and they do sting!!

  17. Hi Denise, checking in on your website as I finished AC (yay!!) and had 1st of 12 Taxol/Herceptin treatments. Had first week in 2 months where I didn’t throw up. What a relief. I know it will be cumulative so could get tough, but I’m hoping the worst is over. Your posts are encouraging at all stages. Hope you are doing good!!

    • The worst was over for me when I finished the AC, and I thought the Taxol was a breeze until the last 3 weeks or so. All of a sudden, neuropathy set in, my fingernails got discolored and misshapen, and a red rash appeared all over my chest. I’ve finished the Taxol now, and the side effects are starting to go away (thanks to time and hydrocordisone), but there’s no doubt that it’s cumulative. If this kind of thing happens to you, hang in there, things will get better. Glad your AC is over!

      • Thanks for the info! I am icing my fingers so hoping to avoid nail problems. Also trying B complex vitamins and Glutamine for Neuropathy, but I realize it may happen.

      • Sally, thanks for letting us know about your Taxol experience.
        It definitely is cumulative. I got so tired toward the end.
        Never heard of the rash, but good to know so I can let others
        know. Grateful you are feeling better. Denise

  18. Wondering when you took the Claritin as a friend who is in medicine says it can interfere with the Zyrtec….have you heard this? When did you take the Claritin??? It’s so confusing as a nurse also recommended it.

  19. Hi Denise I’ve had 2 doses of Taxol. I’m having it weekly for 12 weeks. Been feeling so well untill yesterday , Feel like I have being hit by a bus, body aches all over, also can you tell me if I will lose my hair, it’s just starting to grow back after 3 months of A/C

    • Hi Jennifer, yes those body aches catch up with you on Taxol. They
      hurt like crazy and it is a different hurt. Some doctors recommend
      taking Claritin to help – ask your Oncologist. It helped me.
      Your hair may or may not fall out again. Wish I could give you a better
      answer, but some people’s do and some don’t. Mine kept growing during
      Taxol. I hope yours will too! Any other questions, just ask! Denise

      • I had my first Taxol last Friday….felt ok till Sunday and back and thigh bones started to ache….Tylenol did not help….started a 10 mg dose of Claritin Monday and have had one each day…does seem to help….hair is falling out way less than with AC….

  20. Hi Denise,
    i start my 12 weeks of Taxol in Feb. and am more frightened by it then by the 4 treatments of A/C. All I had with those treatments was nausea, no vomiting, and sleeplessness. Of course the blood counts are low, but that is what the dr. expected to see. Had to have three Iron IVs and those were tolerable, but very longgggg…….
    I hope claritin will work as i have an allergy to Zyrtec so if pain starts will see if my dr. will approve the Claritin.

    Will keep you updated as it is helpful to have this forum to ask questions and hear how everyone is fairing.

    • Hi Anita, you should do much better with weekly Taxol. You may be one of those people
      who just can move through chemo without too many side effects. There aren’t many, but I certainly
      hope you are one of the few! Please keep us posted. If I can be of any help, feel free to email
      me at b4Denise@hotmail.com My best, Denise

  21. Denise,
    I have my fourth and last chemo on Friday, February 1st, 2013. My side effects have been bone,joint and muscle pain. Also, after my third chemo I begin to feel numbness in my fingers and feet.
    When I went thru chemo in 1999, I experienced numbness in my right foot. I still have it today.
    However, I had adriamycin and cytoxan. Not sure if I spelled them right. Do you think it will go
    away after treatment? Thanks!

    • Rhonda…hopefully you will not have neuropathy from the AC..I had 4doses of it ending mid Jan and so far no numbness…..now I am on Taxol and have a bit…not bed though. Good Luck!
      Dale

      • Hi Denise, thanks for creating the forum. Im out of my last treatments by 4 months and found a few things that helped my side effects I wanted to share. Taxol gave me bloody nose and I found a room humidifier and product called NasoGel worked wonders!! Good for your dry skin too. Amlactin is great drugstore moisturizer the dermologist told me about for my terribly dry skin. I had a rash everywhere that Derm precribed , topical steroid ( radiation doctor also recommended for rash at end of radiation treatment). Worked in 2 days- best stuff. Cant find the tube right now for the name of it , Sorry

        My Cancer center has Student Acupuncture available. Having never done acupuncture I was not sure what to expect – but I believe it helped tremendously. I am going back to work on my neuropathy – students are free while they are working on Clinical hours. I research lots of nutrional advise from on line- UCSDTV. They have lectures with doctors and researchers that are unparalled. I belive that most Cancer centers have student or volunters that provide caring services , find out what they have for you. I had irratating pain from neulasta- figured that cold or warm packs were nurturing myself and they seems to help. Joint pain and bone pain after chemo at about 8 weeks was worse. Dont forget to self massage and I found that epsom salt baths took pain away for a few days at a time… and anti inflam- Motrin. Found a lecture on UCSD TV – Head of oncology in SF. has gone into intregrative studies. I am looking at chinese mushroom for helping nerve damage from that lecture.

        AC was nasty- I was too stubborn to take medication on time for Nausia. So I got sick every time. Took me 8 weeks- total time of AC to figure it out. .5 mg of anti-anziety- Lorazepam was great for nausia and nurses said its one of the best no one tells you about. Also low dose sleeping pills prescription if you need them are helpful- saved me from worrying all night. My newest friend from Radiation says she never got sick or lost weight, she took the medication!
        My treatment center belives in low dose radiation current with new studies. I did not get blisters – only got red like a bad sunburn. But I know that others get burned. Here in sunny California I met a volunteer who gave me plain Aloe lotion that she said worked to keep her skin healthy- use in the car right after radiation. Also found several lotions the radition lab had available to us. Udderly Smooth body cream is inexpensive, massage oil , almond oil , layer on after treatment to nurish your skin more than once a day.

        Almost forgot – best way to organise your friends to help you with driving and appointments- Lots of Helping Hands- FREE WEBSTE. Socal worker at every hospital has a list of charities and might help with support groups too. Every hospital ( So Cal) has a support group and free stuff for cancer patients.

        Hope you find some use of these tips,( sorry about the mis-spells)
        Mary

  22. hi my name is patricia i am on taxol i have had 41 treatments i do get tired and things like that but i want to live. I am on it weekly. I am in stage 4 breast cancer that has gone to my lungs bones and i have a bleeding tumer. so you just have to hang on in dont you? i had breast cancer first 25 years ago. i would like to get some support but i dont. i keep trying can you help me?

    • Hi Patricia, OH MY, I am so sorry you have had to endure so much, especially
      without a lot of support.
      My suggestion would be to go to http://www.breastcancer.org Discussion Boards.
      You will have to sign up if you are not already a member – it is free. There are
      hundreds of Stage 4 women and MANY, MANY discussion topics to give help
      and support to Stage 4 women. You will find overwhelming support there and
      find the hope and encouragement you need. I also sent you an email. My best, Denise

      • Hi Patricia, you are in my thoughts and prayers. I am currently Stage 3A with triple negative breast cancer. I start my first Taxol treatment next week. I had 3 treatments of A/C but my tumors continued to grow rather than shrink so we’re trying Taxol next. Hang in there and stay strong! We can all get through this together!

  23. Hi Denise, I just finished my last of the double chemo last Week n 2 more weeks I start 12 rounds of Taxol weekly I only had about of 7 or 8 days of feeling bad with the first 4 rounds just a little nausea n heart racing if I tried to do too much the first week after treatment, But I have reading all these comments n now scared to start to start Taxol. My nurse n Dr said it was going to be easier then the last 4 but I really do not know any one who has gone trough this as I am the first one in family to have breast cancer, I am very Lucky they found it early n it is a stage 1.I believe I have gotten something from reading all of your answers.Will let you know how it goes when I start. Thanks Dawn

  24. Dawn,

    I just had my 3rd dose of Taxol yesterday and all went well. My first chemical was taxotere with cytoxan and I had a VERY severe reaction to the taxotere which did not settle down with lots of pep ids etc so I was sent home….then 4 infusions of AC which were ok, but I too was nervous about the Taxol…..and I am getting it every two weeks, so. Relatively large dose, but no reactions…I have had a bit more nausea and did get Emend in my port yesterday…the other meds for it haven’t done much,and some bone pain,but the l-glut amine and B6 seem to help…otherwise not terrible…I do get 5 Neupogen shots the days after and blood counts are better than when on the AC..so hang in there…it will be fine!

  25. Denise,

    What,Indus of testing do you get on your anniversary dates from chemo, etc..how is cancer recurrence or movement checked??I asked about scans and my dr said no, they just do blood?? Seems like sort of a joke to just do that?? Is there no way to really check? I had grade 3 tumor cells and they are aggressive and my biopsy said mo..mets unknown so 8 am concerned

    • Dale, some doctors do PET scans – some don’t. Some check tumor markers,
      some don’t. Every Oncologist seems to be different. There doesn’t seem
      to be any rhyme nor reason except the Oncologist’s professional beliefs.
      And of course if you have a remaining breast or breasts, mammograms will
      continue to be done. It is all very scarey, though…. Congratulations
      on continuing to make it through!!! Denise

  26. I am so glad my Aunt found this site. It is very informative and helpful as what to expect. Thank you for posting. My mother has Metaplastic, Triple Negative Breast Cancer. She has had the 4 rounds of double chemo, and has 3 of Taxol. It seems that the Taxol is worse on her than the 4 rounds of double chemo. She had a mastectomy in October. Her tumor had a growth rate of 98%. The cancer Dr. said that my Mom’s cancer was very rare. That not only was it triple negative, but also metaplastic. And in all the years she has practiced, she has never seen a growth rate this high. She also said that there was not a test to tell if the treatment was working. Because the mass/tumor was removed. They checked her gateway lymph node and one other one and the nodes were clear, but the pathology report came back as nodes clear, but lympatic system suspect. My problem/ issue is that my mother never wanted to take Chemo., and if she gets too tired, or feels worse, I am afraid she will quit. I don’t want to her to feel bad, or be so tired she can’t do anything. She doesn’t want to go through all this and then it not work. I don’t blame her for that, but I really want her to fight. Her skin is really dry, her bones ache, her fingers hurt, her nails are turning dark, all the things you have mentioned. We bought Claritin yesterday and I hope it helps. Any suggestions you have are welcomed.

  27. Finished with radiation…yay! I still have some neuropathy in my feet – no pain, just the uncomfortable feeling of a pair of heavy socks bunched up under my feet. Do you have any suggestions about vitamin treatment? I’m taking a B Complex, but the dosage may be too little.

    • Sally, hooray for you with being done with Radiation! So happy for you.
      I have some neuropathy in my right foot toes and my left foot heel. I am
      10 months out from Taxol, and it has not lessened any. I take a B Complex too.
      Any other suggestions out there?? I have heard Glucosamine helps, but have not
      tried it. Denise

  28. I was dx with stage 2 breast cancer in Sept 2012. I underwent a lumpectomy and lymph node dissection where 17 lymph nodes were taken out; 2 positive for metastasizes. I had 4 treatments of AC and started 12 week Taxol therapy in Jan. I will finish this April 5. Radiation will begin April 18. Tho I have had most of the same side effects you have mentioned, my main concern seems to be the high and lows of blood pressure and pulse rate. I have several times mentioned this to the nurses which none seem too concerned. Today I have noticed a slight numbness in my left thumb. How serious is any of this or is this the “norm?” Thank you for this site!! I came across this for the first time tonight.

    • hi Beth, I am on Denises site too as I have learned much in my walk with Stage II breast cancer by reading the posts to this site.
      I too have just completed my 4 AC chemo treatments with not too much to be worried with, but the 4 treatments with Taxol have caused some concerns for me. My BP while on the AC treatments was very very good but once i went to the Taxol my BP became elevated each appt. I have 8 more to go then 30 radiation treatments after that.
      I have been using cold therapy to help with the possible effects of Taxol on the hands and feet with neuropathy. So far no signs of that happening, but will keep all updated plus my oncologist gave me name of two products you can obtain from health food store that she recommends too. When I find my card with those listed, which will be no earlier than tomorrow i can share with you.

      • Anita, I’m so glad someone else is fighting this as well. I’ve been on bp meds for several years, but it seems like my bp has dropped while my pulse rate increases. For instance, Sunday my bp reading was 79/58 with a pulse of 122! That is so off the wall. My body felt weird, tho I can’t explain. A few weeks back I had the same thing happen and ended up in the ER as I was concerned. EKG showed mild tachycardia but nothing else. Monday I actually stayed home: literally in bed. I was so exhausted. Even today I’m tired, but I will go to work. I know each person reacts differently to chemo, but was pretty excited when Dr. Told me this was the “easy” stuff. Now I’m feeling like a wimp!! Thank you for your reply and any help u can offer would be great! Ill lift your journy up in prayer as well!! Beth

      • Anita and Beth -I had bp and heart rate problems during Taxol. Because I had heart damage from
        Herceptin, I was referred to a Cardiologist. He put me on Lisinopril and Metoprolol because my
        heart rate was averaging 112 to 120. My blood pressure kept going high and low. The meds have
        helped me so much. If you keep having problems, please ask for a referral to a Cardiologist.
        I was terrified to have to do that on top of everything else, but it certainly has stabalized me and
        helped protect my heart.
        It will get better, I promise. It is so hard in the midst of Taxol as it seems it will never get done.
        I’ve been done with Taxol for 10 months. My hair is looking normal. That makes everything feel better.
        I am so thankful my Blog has been a help to you! My best, Denise

  29. Thanks so much for writing your blog. I’ve managed to keep a journal since diagnosis day which has been very helpful. My radiation has just begun….session three today. I have been through 3 months of AC followed by 12 weekly taxol infusions. Tamoxifen awaits after radiation. Thankfully I had no nausea symptoms during any of the treatment. My hair went and is now just over a centimetre long. Yay! Having finished Taxol the joint pain is now starting for me…I feel 20 years older than my present age (54), however I know this will subside. Numbness in a few toes still bothers me but hopefully that will go as well. Your encouragement and wealth of information would have been very helpful through my journey but I’m glad I’ve found it now. My attitude to life really changed through having cancer. God has shown me the things that really matter in life…
    1. Our relationship with Him
    2. Our relationship with our family
    3. Our relationship with others.
    Notice that work isn’t included in this list….it will be on the list, but further down! I plan to take more time off from teaching to let my body heal and to absorb the new perspective that has been given to me. Stress levels play a big part in the healing process so I feel as though it’s my duty to give my body the best chance to recover fully. Thanks again, Denise, for your blog!

    • Kerry, congratulations on being done with Chemo and on to Rads.
      Thank you so much for sharing what you have learned with others. I so
      agree that stress levels play a big part….so let’s continue to reduce
      our stress. Thanks so much and glad your hair is growing back already!
      Woo hoo! Denise

  30. Hello Denise..I am Rona 42 years old. I had undergone MRM of my right breast last Dec. 2012. I was diagnosed with stage II B invasive lobular carcinoma. I had my first taxol treatment just a week ago. I still have 3 more cycles to go. Treatment is every 3 weeks as prescribed by my oncologist. Weekly is better as it has less side effects, as you said. I will try to refer to my onco. I agree with other patients that nausea is not so much of a problem with taxol. A day after the treatment i felt numbness in my hands and feet, pain of my operation, Even up to this time i still have this feelings. I am thankful that i did not experience other side effects of taxol you have enumerated earlier.

    Thank you very much for your blog. It really helps a lot, it’s a good avenue to exchange experiences we have been through in combating this big C. It also gives hope to others who feels so down and still on denial stage…once again…thank youi Denise….Cheers

  31. Hi Denise, I’m Jing 36 diagnosed of breast cancer stage 2. Had my mastectomy march 7, 2013 and I’m on my 2nd A/C still in pain on my stomach that’s the worst side effect I had since then. Hope my 3rd & 4th will lessen my pain. And looking forward for my 12 treatment on Taxo. I’m glad I browsed ur site it really helps me a lot reading it all. Thank you.

    • Hi – thanks so much for writing. I am very sorry you have to go through
      all of this, but glad you almost have 2 A/Cs done! That is definitely the
      worst part of everything by far! Feel free to contact me anytime with
      questions or anything I can help you with good luck today! Denise

  32. I’m so glad I found your blog! I start Taxol on Thursday. I went through the “red devil” chemo and radiation. Lost my hair, etc. My onco tests for cancer markers. Three months ago it was 31 (normal being 30) and recent test showed it had jumped to 61. He ordered a PET scan and sure enough, two tumors on the left chest wall and 2 spots on my liver. My husband is now in last stage of lung cancer, and I am his caretaker. I don’t know how I’m going to do the Taxol treatments and take care of him. I guess I’ll find out. I know a few years ago he had to have Neupogen injections but only took 2 due to the extreme severe back bone pain it caused, so I really want to learn how to keep up my blood counts to avoid this. Any suggestions?

    Blessings to you all, reading your stories has helped me so much, real life accounts of what to expect are so much better.

    • Hi Sandy,

      I had three treatments of A/C but it wasn’t working so my oncologist switched me to weekly Taxol/Carboplatin treatments. I did not have to take any injections to increase my counts but that may have been because I was on weekly treatments. I will tell you that I did miss the fourth treatment because my counts were too low but they came back the next week and I was able to get treated without any further issues. I did have back bone pain but I took Claritin and that seemed to help. I felt good during these treatments so hopefully you will as well. I will be praying for both you and your husband and I wish for you the very best.

  33. Thanks, Denise! Yes, I am triple negative. They wanted to give me Herceptin (and still do) but with the insurance paying for the Herceptin, the office visit was still going to cost $250 per visit. No way can we afford that. Yet my friend who has no insurance but Medicaid, pays nothing for her Herceptin. At least this time I got the chance to tell the doctor how I felt about them charging me $250 for my co-pay.

    I will definitely check out the link and thank you so much! Yes, my road is very hard to travel right now. Losing the love of my life for the past 40 years and now this news is just about more than I can bear.

    Oh, I am in Arkansas.

    Have a good day!

    • Sandy, here is an application for co-pay assistance for those diagnosed
      with breast cancer. It is through Komen and may pay for all of your
      copay for Herceptin.
      http://www.copays.org/resources/breast.php
      I am glad Sherri responded to you as she had a similar diagnosis as
      yours. Also, I have another reader from Arkansas who writes to me
      and I believe is Triple Negative. I am going to contact her for you.
      Perhaps she has some advice… prayers for you and your husband. Denise

  34. Oh Sherri, I’m so sorry, I didn’t realize I had put Denise. thank you so much for your kind words. I’m taking iron now as RBC was low during the first chemo session. So far so good on the back pain. But I also have syringomyelia, a very painful and serious spinal cord disease which I take pain meds for chronic pain syndrome so that is probably helping.

    Denise thank you so much for that link. I will look at it right away. I’d love to hear from another triple neg. person from my state. I know that I’m not the only one but it sure can get lonely out here. :)

    thanks again, ladies! Have a great day.

  35. Hi. I finished up cytoxan and adrimycin. And started Taxol Thursday. I felt great at first, until yesterday (Sunday) I woke up at 5 am in so much pain from my waist down to my toes I couldn’t walk or stand. All I can do is ball up in cry in pain. I’m allergic to all pain meds. Please help anybody. Please tell me it doesn’t last long. Already l have already lost feeling in my fingertips.

    • Cortney – please call your Oncologist immediately. Claritin, over the counter allergy medicine,
      can help the pain. Usually, the pain hits 3 days after infusion – lasts for a day or day and a half,
      and then gets better. As far as losing feeling in your fingertips, please read my post on
      icing during Taxol to help this from happening. Please email me at b4Denise@hotmail.com if I can
      answer any questions. Denise

  36. Cortney,
    Denise is on target with the Claritin..really helps. L-glutamine too…and the icing during infusion…I am 8 weeks after taxol now and only have some neuropathy in one foot and it is improving!! Good luck!!!

  37. Hi,
    I had breast cancer. When i have my 1st chemo Taxotere and 2nd with carboplatinum 3rd with taxol all give me body reaction like tiedness of chest ,short breath ,hot flash.

  38. Denise,
    Now that I am finished with AC, and onto Taxol- and have no more nausea or shortness of breath etc….. I am able to enjoy all of your blog:). Thank you for your honesty, humor, but most of all encouragement. In my darkest hour – you were a bright light and gave me hope. For that I will be forever grateful!!

    • Lisa – I AM SO GLAD you are done with AC!! I am so glad Taxol is
      being kinder to you! Your kind words brought tears to my eyes.
      I am grateful I could be of help. It is so hard in that dark
      tunnel. But truly there is light at the end of it. Enjoy that
      light – it will only get brighter! Denise

  39. Tomorrow is my last AC treatment before I start Taxol.I’m super nervous, but everyone’s post has helped me prepare myself! Thanks
    Jessica

    • Oh glad we all could help, Jessica. Being done with AC is time to celebrate!
      Taxol will be better – at least for most of us! Please check back and let us
      know how you are doing! My best, Denise

  40. Thanks for the info, I’m starting taxol next week….I hope for the best…thanks for sharing your experiences with me…

  41. Hi Denise
    It was so to find your blog, I will be taking my 3rd AC treatment, it has been hard I was hospitalized just over the weekend blood counts low i couldn’t keep anything in. I will be start Taxol July 26th very nervous, undecided if i want to do the Taxol in the 12 weeks period or the 4 treatments bi-weekly do you have any advice that could help me decide? I had a Double Mastectomy with reconstructive surgery DIEP Flap, I am Tripple Negative. This is a wonderful site Thank You for taking the time to share your story it helps so much.

    • Hi Carmen, I wrote you an email. There was just a study released that shows Taxol is just
      as effective whether in 12 weekly or 4 larger doses. My Oncologist said side effects tend to
      be less with weekly. Maybe some others will chime in!!

      • I also had 4 treatments of taxol, biweekly…wanted to get it over with and my oncologist said there was no difference in efficacy….no major side effects…some leftover neuropathy in one foot, stiff ankles..but now I am developing crazy hives….taxol or arimidex???? Anybody???

    • Hi Carmen,
      I had three AC treatments and then I was switched to weekly Taxol/Carboplatin treatments. I still had some bone pain with Taxol but it wasn’t as bad as it was with the AC, I also took a Claritin each day and that seemed to help as well. I had a little neuropathy in my finger tips but it has now disappeared. I was supposed to have 12 weekly treatments but they stopped treating me after 6 weeks. I passed out cleaning house and broke my foot so they decided I had had enough. I had my lumpectomy at the end of April and I am almost finished with radiation. My hair is returning, I feel great and I couldn’t be happier. I too am triple negative. Do not be nervous about Taxol. If you can make it through AC you can do this! My best to you.

  42. Hi everybody!
    I had Grade II b invasive ductal cancer, and had a mastectomy dec 5 2012. I had had a smaller lump in the other breast 27 years ago and only did radiation. Then I had controls, and lately had a mammography every year, but my breasts were very fibrous so they did not show any sign of cancer. Now I know that I was a nearly high risk patient,1. because of the previous cancer and radiation, 2. because of age (I’m 72), and 3. because of fibrous breasts. Shouildn’t my gynechologist have paid attention to those points?
    In February I started every three weeks A/C four cycles and had no problems with it. I walked nearly every day for an hopur at a brisk pace, because I learnt from a clinical trial that it could help avoid heart damage. After it my Onc wanted me to start Tamoxifen, but I wanted a second opinion at a very well reputed centre in Buenos Aires, the capital of our country, Argentina, and they advised me to do 12 weeks Taxol. So, my oncologist said that she did not agree, but would do it if I insisted. Yesterday I completed my 5th week. As my WBC count was getting low I searched on the Internet which foods helped to highten the number of WC. I started adding green tea, orange juice, carrot juice, Shiitake mushrooms, beetroot leaves to my already abundant vegetable and fruit salad lunch, at night a yogurt, 30g chocolate with at least 10 almonds as dessert,and a small bottle of non-alcoholic beer (because of the yeast), believe it or not, it helped a lot and I did not have to rest. My Onc says I probably have an exceptional genetic condition and encourages me to go on with the diet additions. It’s better than having to use any medicine. So far, so good. I did not have to interrupt my usual activities. I feel almost as energetic as always, and my hair, which had started to grow immediately after my 4th A/C, is still growing. No signs of it falling yet. Maybe I’ll be lucky enough to keep it. I hope my diet will be useful for those of you who have problems with WBC counts. And also hope the treatment is working.
    Julieta

  43. Thank you everyone who has taken the time to post on this site, share your experiences and encouragement! I was diagnosed with Invasive Lobular Carcinoma on 3/13/13 – now that is an easy date to remember!! I was ER and PR positive and HER- with a 4.1 centimeter tumor. I do not know what stage but at least stage II due to tumor size.I chose to do the chemo first along with my oncologists encouragement to shrink the tumor prior to surgery. Last week I finished my 4 A/C treatments and July 11th start my Taxol once a week/12 weeks. Prescribed oral steroids to take prior and after treatments. I really appreciate the Claritin advice as I take Zyrtec everyday and may need to switch. My side effects increased with each treatment. I had hair loss, queaziness (but meds helped) sensitive to odors, and increasing problems with shortness of breath and fatigue. My memory and ability to concentrate has been diminished as well. My last treatment I developed some slight neuropathy in my fingers. My biggest concern has been the heaviness in my chest and the shortness of breath so before I begin my Taxol I am going to see my cardiologist. I never had a cardiologist before cancer. I had to get an echocardiogram before treatment so I do now. I am 56 and other than cancer my health is good. I wanted to start this so I can share my experiences going forward. I am grateful for the tips given for Taxol side effects. I am still working as I have no choice and will continue to work until I finish all treatments surgery’s and radiation ect God willing. When not working I do nothing. I am blessed to have alot of support and a husband who waits on me hand and foot so I can continue to conserve as much energy as possible. I have found that breathing exercises and meditation helps with both stress and energy. I plug in my ear buds (I had them in during all four A/C’s and would listen to the healing meditations and music. I know it helped me) and breath. Purposeful breathing has been a huge help for me. I stay very positive and work on positive imaging during and after treatment. I like to think of the drugs as healing white light that is flowing through my body and transforming all cells into healthy and normal cells. I also believe that nutrition plays a huge part. I know that food can be a big issue and some people can’t eat hardly at all – but I was more fortunate. I just became a picky eater. Everyday was a new day when it came to food. But I have read B vitamins especially B6 is really important and also my oncologist advised that Tumeric (bought in a pill form at a health food store) is a strong antioxidant as are broccoli sprouts. I have made it through the last 3 months and I will make it through the next 3 months and then deal with the next steps as they come. I will post after my Taxol treatment and as I go through in hopes of helping others with what I experience and learn. A special thanks to Denise for starting this blog!! This is my first time posting anything since I was diagnosed but your blog inspired me – not an easy thing to do!!! Healing to everyone and remember even in the darkest hour there is something to be grateful for and something to bring you joy!!!

  44. I wish I’d found your blog before I started Taxol. I’m done with it now (still need radiation), but it would have helped to know about icing my hands during the infusion. Several fingernails are dark brown, and I hope I won’t lose them. Also, your “steroid high” makes perfect sense. I wondered why I felt relatively well for one or two days after an infusion, but then crashed for the next four or five days. Thanks for all this information. I hope you’re doing well.

  45. Thank you for this blog and I have found it very helpful. Starting Taxol next week. What keeps creeping up in my thoughts is how all of us have this cancer. I am obsessing over pesticides on food, in water and in air. It seems the UK has done a great deal of research that is informative. None of us want to come back to this in the future . None of us want to see our loved ones go through this. I have stage II cancer and my prognosis is good. But again, I question is this the cancer generation? The feel good organizations for breast cancer need to focus on cause and cure. I keep thinking too of all those children with cancer. Their immune systems did not have time to develop. Ladies, we must seek a cure!

  46. hi Everyone today is my last day of my taxol when u have taxol you cant have a period but i am bleeding it scares me. i try to call my healthcare provider nobody answer

  47. I did react oddly to Taxol as AC. In Ac my bladder was extremely irritated and used to perineum to calm it down. Married to a physician (easy to pick up the phone for help and info) also got to speak to head of urology. Now with Taxol , my large intestines blew up leaving me with ‘gas’ pain for 2 days. Swore I would eat more bland food to see if I could counteract some of this. Trying to walk too to move my digestive system. I do see the light at the end of the tunnel. Three more treatments. Can’t wait to get my life back. I am American-Greek and not being able to party and feed everyone is difficult.. My friends took over feeding me instead. We Greeks break plates because it doesn’t mean anything. We believe in living. So ladies if I could I would invite you all over to do so when we beat this battle.This blog helps alot, listening to our battles. Sadly, if you don’t go through this you simply do not understand.
    I did ice my hands and feet during Taxol. Ironically ,the bone pain stopped at the wrist and ankle. I am now hearing that patient at Sloan Kettering use ice caps and their hair did not fall out. Too late for me.May try some ice on brows and eyelashes next time.Thank you all for sharing your stories.

    .

    • Mary, sorry for your digestive problem. Maybe if you have whole cereals for breakfast and drink a lot of water may help you. It does help me. I also have 1 Greek (funny, isn’t it!) yoghurt before going to sleep.
      I havd a different problemb . After my 5th week of Paclitaxel my gums bled when I brushed my teeth, though I did it slowly and carefully. Then, after week 7, I started coughing and spitting blood. I was diagnosed bronchitis and given a Amoxixillin + clavulanic acid and told to stay in bed. I was under observation in hospital for 3 days. They monitored my heart, blood pressure, had lung X-rays abd CAT which showed no problems. Now, a week after it started, and not having had my 8th, Pac cycle, Im havin only a dark sputum, like a clot, when I cough, and luckily no blood,which at first was quite rightening because once I even felt I couldn’t breath because of the blood.

      Julieta

      • So sorry to hear this. Just had my lumpectomy and getting ready for radiation. I am triple negative stage II. It seems the chemo completely shrunk my tumor and lymph node cancer. That’s the upside, the downside i still have bone pain post taxol- last one August 27th. It is discouraging as ‘scrubbing’ is one of my favorite mindless past times. Can’t do that well now.Ladies we are all trying our best. My advice is keep asking your doctor questions.

      • Mary – congratulations for getting through Chemo! That bone pain should
        end soon. Good advice about asking doctor questions! Radiation is
        inconvenient and an emotional time, but YOU WILL GET IT DONE!! Thanks
        for sharing! Denise

  48. Thank you Denise for sharing your experience with this horrendous disease! I was diagnosed 12/12/12 with breast cancer and went through many scans etc so that my treatment finally began with a lumpectomy in February. At that time, lymph node involvement was detected so chemotherapy was thrown into my treatment plan.

    I chose to forgo Adriamycin when I saw in Dr. Susan Love’s Breast book that it is actually a controversial drug that is being considered for removal since it’s risks tend to outweigh it’s benefits. I had my case presented to the UC Davis tumor board and they agreed I could go without the Adramycin.

    In any case, I’ve completed three of the four prescribed rounds of Taxotere and cyclophosphomide. I experienced an allergic reaction to the Taxotere on the second round, did the prescribed preventative measures for the third round, but broke out in hives and had my throat closing down about 5 days later. My oncologist chose to stop treatment and move on with the radiation.

    I did soak my fingers in ice during treatments and therefore have no ill effects regarding my finger nails. However, I’m five weeks out from my last chemo treatment and have begun to experience an allergic reaction to my cats. My eyes are itching like crazy and my face is breaking out with a strange rash. I am seeing my primary care physician for this and was prescribed Clariton as well as eye drops. I’m being told it would be best if I found a place for my cats to stay until this passes.

    Is this what you had to do when you were allergic to your cats Denise? Or were you able to keep them around?

    Again, I’m so grateful to see something regarding allergies following treatment as I tend to feel I’m “the only one” in this crazy journey.

    Itchy,
    Susan

    • Susan,
      I saw my primary for hives or welts that kept appearing, and itching like crazy, everywhere…did the Claritin three times a day..no help, so I started eliminating things ….my ai for two weeks, omaprozole next, wine, eggs, etc…nothing helped….saw an immunologist/allergist yesterday and he said the chemo has made my system go haywire producing antibodies and it is NOT an allergy to anything exterior to my body…taking prednisone and two other meds and 3 Zrtec a day and he ran a lot of blood..waiting on results. Maybe it is not your cats!!!

      • Thanks Dale!
        How crazy is that! To have allergic reactions to something in your body, or maybe nothing…I’m so sorry you are on steroid meds.

        In my case, it’s itchy burning eyes and a feeling of my throat trying to close. So far, I’ve taken one dose of the generic version of Clariton and it’s not working. I’m also looking for a friend who can take my cats for awhile. That may help me narrow this down.

        You may be right, it may NOT be my cats. I’m sure there will be some investigating to do.

        Best of Luck to you Dale!
        Susan

      • Hello Denise,I was able to speak with a nurse in my treatment center today and according to my records it was indeed Taxotere that I was given and reacted to.Best,Susan

  49. I wanted to give an update on my Taxol treatments. I finished my 4 A/C treatments with no severe side effects except fatigue and I did go to my cardiologist as my heart felt so heavy and strained but they did an EKG and said my heart was perfect. I am so grateful for that. I did hit the panic button when I went for an ultrasound and found out the the A/C treatments did not shrink the tumor or change the blood flow so I began to doubt everything but with the help of talking to my surgeon and another oncologist and my current oncologist I got back on track and began my Taxol. I have had 3 treatments — with a week skipped because I needed to take a step back and another week skipped because my white count went down too low and I caught a stomach virus and didn’t realize it and took another treatment which made it worse so my scheduled 3rd was skipped. But, tomorrow is #4 and then 8 weekly left as long as I don’t have anymore delays. I thought long and hard about the ice but in the end decided to give it to God.
    I have been lucky in only experiencing the steroid high and crash which leaves me very fatigued and my brain doesn’t always work the way I expect. My memory and cognitive thinking has diminished. I have had some tingling but nothing to really complain about and no bone pain – but I do take a Zrytec everyday and have for a year now. (except when they gave me two booster shots that went into my bone marrow to bring my white count up….I’ve heard some people don’t know you can get these shots instead of infusions but maybe it depends on how serious or low the white count gets.)
    I DO WANT TO MAKE EVERYONE AWARE OF SOMETHING THAT IS NOT LISTED AS A TYPICAL SIDE EFFECT AND PROBABLY NOT VERY COMMON. I went to have my eyes examined – a routine exam to get new glasses and in the process found out that I am a steroid responder and my optic nerve pressure was very high. This means glaucoma. My opthalmologist said my cornea is thin and that the nerve damage is most likely permanent but I caught it early enough that with the eye drops she has prescribed we should be able to control it from getting worse. I had NO symptoms!!!! This means a side effect from the steroids.
    I was working a very demanding job both physically and mentally and since I started the Taxol it all caught up with me so I am lucky to be able to take short term disability so I can focus on finishing my treatments and preparing for surgery. I have decided to do a double mastectomy – it’s the reconstruction that is my big decision. I want to get back to work as soon as is reasonable but I also am 56 so I want to be happy with my decision.
    I know i am very fortunate to have a good prognosis for the future. I pray for all who are having to endure this and will continue to support you in my heart. I will keep you posted on any further side effects and my follow up on my eyes.

  50. I was so happy to find this blog. Thank you, Denise. I hurt my back in November 2012 but didn’t go to the doctor until June 2013 after a 7600 mile roadtrip. My back spasmed. So straight to the ER we went. Broken back. Sent for an MRI plus appt for neurosurgeon to get it fixed. Day after MRI they called and said they were so sorry but my spine, hips, and ribs were covered with metastatic lesions. Here I am 9 weeks later, 3 surgeries, 10 radiation treatments and will have my 6th taxol/herceptin/perjeta/zolodex/xgeva treatment on Tuesday, 9/3/2013. The taxol/herceptin is weekly. The other stuff is more sporadic. My official diagnosis is Stage IV Metastatic Breast Cancer with lots of bone mets.

    I have tolerated the taxol very well. The neupogen shots that I get for 2 days after chemo are rough. But claritin helps with the pain. Especially when taken with motrin and tylenol. I do have the dry nose with blood, a dry nagging cough and sensitive skin around my stomach and back. No neuropathy yet. I’ve been very concerned because I’m an organist and also a piano teacher. I will start icing my hands this Tuesday. Oh yeah, my hair is very very thin. It’s taking its time falling out. But it IS falling out.

    I also take supplements. I take zyflamend, ellagic acid, chlorella, and spirulina. My husband juices carrots, celery, and radishes for me twice a day. And I haven’t had sugar since the diagnosis. I drink only water except on my worst day which is Thursday, after the 2 neupogen shots. I drink a caffeinated beverage to fight the fatigue. It really helps.

    • Hi Cathy – oh so very sorry to hear of your story. I met a gal in chemo – only 21 years old – cancer ate through her spine with lots of bone mets and other mets everywhere. Small town doctor gave her 6 months or less to live – she went to a big cancer center. She was now 7 years post diagnosis and going strong! She is the one who encouraged me to do the icing during Taxol.
      One more story – I met two other women during chemo – both had lots of bone mets. They, too, had been given the less than 6 months. One lady was alive 11 years and the other 19 years! They told me never give up! I am telling you that too, Cathy!
      One thing I might warn you about – I was told not to juice at the Univ of Michigan during chemo. They told me it could interfere with the chemo killing cancer because juicing is powerful stuff. There is a lot of debate on this,
      but I wated until I was done with chemo.
      Thanks for sharing your story. Please check back and let us know how you are doing! My best, Denise

  51. Denise, do you have to have steroids on Taxol? I’m finishing my 4 A/C sessions and the worst side effect was nausea and the steroids upset my stomach and made me very depressed. I will be on 12 weekly taxol and hercepton and this will be followed by surgery. I was really hoping that I wouldn’t need steroid!!!!!

    • You do get steroids on Taxol, but not as many. I had terrible times with the steroids too.
      Aren’t they awful? I only got the steroid injections with the Taxol but did not have to take
      them orally. Then, when I didn’t have any allergic reactions, they cut the steroid dosage.
      If yours does not get reduced, be sure to ask your Oncologist if they can be reduced to help
      you through! Congratulations on almost finishing A/C!!!!

    • I got plenty of steroids (prednisone), 2 40mg pills the day before and 3 the same day of the Paclitaxel session. My oncologist did not reduce the dosage because she thought I would have some allergic reaction if she did. What I felt was not nausea but two days after I felt kind of unstable as a result of leaving the steroids suddenly after such high dose.

      • Thanks all. My very first chemo session under a different oncologist and hospital I had a severe allergic reaction to Taxotere and ended up in hospital for a week. So needless to say I went for a 2nd opinion and now have a really good oncologist but am still very concerned about having a reaction to Taxol even though my weekly sessions will be reduced dosages. I was really hoping for no steroids but I guess I’ll just have to try it out and see. Again thanks to all.

      • Oh my hospitalized for a week after Taxotere. I am so sorry. They will watch you like a hawk,
        so you won’t have to worry so much. But of course you are scared. I am glad you got a second
        opinion and a new Onc and hospital. They will probably keep you on steroids, but perhaps they
        will reduce them….please let us know how you are doing. Denise

      • I also had a severe reaction to taxotere…extreme back pain,like being sliced in two….made the poor woman in the chair next to me cry! They tried more steroids and pepsid to get control and it did work….was terrified to take taxol, and they did watch me carefully, but the infusions were all no problem….you can do this!!!

      • Thanks all. At the moment I think I’d prefer to do 6 of AC instead of 4 and not do taxol at all. I’m meeting my Onc on 18th October so this will be discussed in detail. I will keep you updated.

  52. Does everyone on Taxol get neuropathy in their hands and feet? From what I can see it seems to be the main side effect? Am I right or wrong?

    • I finished Taxol at the end of April and have a numbness under my toes which doesn’t seem to have gone away. The oncologist said it may fade over time, but I could also be stuck with it. I’ve come to the conclusion that it is a small side effect to cope with in order to have the benefits of the Taxol. I’m not sure about others, but this has been my experience.

      • I finished Taxol 2 weeks ago. I already had a neuropathy in my feet, which hadn’t been diagnosed before. (I felt as if I had a pair of socks on). After the 10th Taxol session I felt as if it had got worse. I had seen a neurologist who prescribed tioctic acid pills. So, as soon as I finished with the Taxol I started having them, and I think I have improved. I waited till finishing the Taxol because my oncologist had prescribed Vitamins B1, B6 and B12 to have during the whole treatment to avoid the neuropathy, and she did not want me to start with the other pills then.

  53. I just completed my 12 weekly Taxol treatments on Oct. 4th. I had pretty much the same reactions. Still achy and toes tingly, but began to feel more like myself as the weeks went by. Except one week towards the end was like week two, very achy and feet hurt a lot, but it was gone in a few days. Herceptin every three weeks, I begin radiation next month so moving along. ~ Stage 2A, 2/9 positive lymph nodes HER2+, ER+, PR+, diagnosed at age 42 in March, 2013.

  54. Hi Kelly, I’m starting Taxol with Herceptin for 12 weeks in a few weeks. Just finishing my last AC treatment. Can I ask were you sick for the 12 weeks or could you function normally? I’m very nervous about it and hate the idea of being constantly sick for 12 weeks and the neuropathy side effects. In the larger scale of things its a small price to pay but I would appreciate any information from someone who has gone through this. I’m ER and HER2 positive and am 49yrs old.

    • Hello,

      I first want to tell you that it may seem like forever before these 12 weeks will be over, but they will go faster than you think. With that said, NO, I was not sick and began to feel like I could function normally again a few weeks in. The doc said it was residual from the A/C in the beginning. I am not sure if you were very sick with the A/C, but I was. Very sick, throwing up for six days, feeling like I wanted to throw up for an additional four just to start all over again. So the 12 weeks were a welcome change. They were easier, but some days not easy. Everyone kept thinking because I wasn’t sitting with the garbage can on my lap, that it was easy breezy. Most days were easy, but some were hard. The muscle and joint pain surprised me, but got better over time. In the beginning it would last three days then less and less until not at all. My two big toenails fell started to get icky and half fell off, And the tingling in my toes can only be described as if you had band aids on your toes and try to bend them. It feels funny. But again so much better than the A/C. I could drive the next day, could do normal chores. I do not work outside of the house, I have a five year old in half days so I take care of him. I was more tired but manageable. My fingers started to feel the neuropathy and the doc lowered the dose of the Taxol the last couple of weeks. He was worried about long term permanent effects. Everyone’s experience is different. I met a nurse who had a harder time with the Taxol.

      If you would like to email me directly, I would be happy to talk with you. getwhitit4@yahoo.com. Please email me if you just want to chat or want to know if something is normal or not. Or if you want to chat. It is nice to have someone who is just a step ahead and I would be happy to be that person if you need me.

      Good luck to you. You will be great. The bigger picture is the target and you will be stronger for getting through all of this. Keep laughing, keep positive and fight!

      ~~~Kelly

  55. I have had 9 Taxol treatments when I noticed I was having trouble with my feet felling like I was walking on rocks, very painful. I also have red blotches all over different parts of my body. My oncologist says it’s Hand & Foot Syndrome. She has delayed the remaining treatments for a couple weeks, but she felt the condition has not improved enough to resume my treatments. She again wants to wait another couple weeks, at which point, she may decide to continue or discontinue the last 3 treatments. She mention another drug that I would receive one time that is 3 times as powerful as a single dose of Taxol, but the Hand & Foot syndrome could become worse than what I already experienced. I’m concerned that if my cancer recurs I will be sorry that I discontinued the treatments.

  56. Linda, did you have any other chemo besides Taxol? I’d also be interested in hearing about Hand & Foot syndrome Denise. Thanks.

  57. Thank you so much for your article!! I just received my 2nd weekly taxol/Herceptin chemo just yesterday. I’m so happy and glad I can live my life without nausea during this round of chemos. Yes, the whole weekly thing is a bit annoying but I thank God I have a great employer that allows me to be out whenever I need to be. I’m going to do your recommended ice treatments during chemo next time.

    • Hi Delia – no nausea is the greatest blessing of Taxol !! Certainly, it has
      its own difficulties, but without nausea, coping skills are better! My best to you!
      You are fortunate to have a great employer! I get so many emails from women who have
      been fired through cancer. Very sad.
      The icing really does work! My best to you! Denise

  58. Hi Denise, I had to have my port-a-cath replaced recently and after the procedure I developed a blood clot in my arm. I’m on injections for the next 6-8 weeks but the arm is still extrememely sore and very curtailing even though through the pain I managed to have my last round of AC!!! So Taxol/Herceptin next.
    Have you or any of your followers experienced this and if so how long does it actually take to heal?

    Thanks..Aoife.

    • Aoife – oh my so very sorry to hear of a blood clot in your arm.
      Honestly, no one has ever told me about this before. So thankful
      you got that last round of AC done, however! Taxol and Herceptin
      should be kinder to you.
      I wish I could give you more advice about your port, but I cannot!
      Perhaps someone else will be able to chime in. Denise

  59. I had my 8th Taxol infusion last Friday. Seems pretty typical. Sat and Sun really good. Monday slowing down and today feeling really crappy. Like the flu – hit by a truck. I think Wednesday a little off too. This is the first day that I have not gone to work and am just sitting around and reading this great blog. I have had a pretty red rash(just on my arms) last week and this week. Advised to take Benadryl which I don’t like. I’ve had no nausea on Taxol, just indigestion and heartburn. Controlling that with a pill. I guess my question is will this get worse before I finish taxol? Then I start the A/C for 4 treatments over 8 weeks. I’m really nervous about that. Thanks for all the info, it really helps. Also, I have stage 2 invasive tubular breast cancer. 12 weeks taxol, then the 4 a/c, then lumpectomy, then radiation.

    • Hi Karen – crash and burn usually comes about Day 4 so you are right on schedule.
      Taxol is cumulative, so it does get worse in those final infusions. I had bad
      rashes too, and they prescribed a topical ointment called Clindamycin 1%. It really
      helped me as the rash was on my face.
      Heartburn is very normal and will go away when you are done.
      I find that women who did Taxol first often do better with AC because they have
      chemo experience under their belt. It is still hard, but Taxol will have taught
      you a lot by that point. With AC, just make it your goal to get it through it.
      And you will – you are doing great! It is such a long and difficult road! Denise

  60. I have my 8th Taxol weekly treatment this week. So far, so good. I had double mastectomy with reconstruction after 6 treatments of FEC and now missing 4 Taxols. Steroid pills given to me prior to chemo make me a bit jumpy and very hungry .First two times my face got red but that never returned. However, hair has grown enough to wear it as pixy style (apparently very “in” now)! No side effects that are bad at all!!! I go to work every day and continue to be active with my family. I hope it continues this way for the remainder of the treatments. Still missing implants scheduled for April 15.

    • Kathleen – WOW, you are doing amazing! And having your hair that long
      already is highly unusual!! Good for you! YOU GIVE HOPE to many!
      You are in the Top 10 percent!! Keep it up!! My best, Denise

  61. Hello. I’ve just had my 3rd Taxol today. I understand a lot and relate to everyone who has posted on this page. I have had many days feeling very negative. Yes I have had one or two days very depressed but I have been able to pull myself out of it without medication by doing some work outside in the garden or just taking a brief walk down the road. I have made it very aware to my family on the days I feel depressed, and they help me by accepting my feelings at that time. The good thing is that I do not and have not ever felt suicidal. I have spoke to my Gp and he was wonderful.I am going to stick this out even though I have have stated on a few occasions I may not make it to the end. And I have to say reading the comments here make it seem not as bad as I had thought beforehand. We are not on our own.

  62. Thank you so much for this information, I begin my Taxol treatment next week. I have had severe side effects with AC. im looking forward to a little easier time.

    • Hi Brandy, congratulations with being FINISHED with AC. From 95% of women I hear from,
      they have a lot better time on Taxol. It has its own challenges, but they are easier to
      deal with daily. My best to you, Brandy! You are doing it!!

  63. Thank you so much. My father diagnosed as an esophageal cancer 2stage. He finished his chemotherapy with 6 repeats. Now he is waiting his surgery. Then he need to enough energy to have an operation. But he is still suffering from his poisoning from chemotherapy. How can he get rid of that? How much time it took for you. And if you were suffering from that too,how did you solve it? what did you use to?

    • It takes a lot of time and everyone is different. I tried to rest as much as I could
      with exercise in between – just walking. And drinking lots of fluids. Those little things
      help especially in preparing for surgery. But the effects of chemo can linger for years…
      I wish your father, you and your family well…Denise

  64. Now he is not able to eat food, or drinking too much fluids,(just little bit) because of sticking in the throat with tumor. He lost 25 kg. I hope after surgery we can drink and eat enough . But he needs enough energy to have an operation. And I don’t understand how to get enough energy without eating and drinking enough. And his chemotherapy doctor left Mongolia. Then he has no chemo doctor now. /Actually I’m from Mongolia/. In your country, for this case what advice doctors give? / Sorry for asking irrelative question from breast cancer. And thank you. / after surgery doctors said another chemo 6 rounds will begin/

    • A family friend had esophageal cancer. After chemo, they put a temporary feeding tube into him so he could
      get his strength back since it was difficult to eat. After surgery and when he got his strength back, it was removed. Oh I am so very sorry about his chemo doctor leaving Mongolia. How very challenging for him and for you. I am so very sorry.

  65. Yes, it is requiring a lot of patience for him. After I translating to my father about your blog, he felt better than ever, because in here Mongolia doctors or nurses no one said about no nail trouble. Few days ago, he was feeling very worried about his leg, because the nails were secluding from skin. Now we are going to try your advice (: Thank you for your priceless information.

  66. I just had my third AC treatment on Friday. Not doing too badly on it this week. I have one more Ac to go and then i start taxol. Ac is once every two weeks and my taxol will be once a week for twelve weeks followed by 8 weeks of radio therapy. I am only 30 so this has been quite the kick in the teeth.

  67. I was a triple negative breast cancer patient. I finished my red devil and taxol treatment February 17. My tumor had shrunk had surgery to remove tumor march 25. Surgeon couldn’t even find it lucky they put chip in breast during biopsy. I am getting ready to start radiation as soon as we can get fluid under control where lymph nodes were removed(negative results)I am one lucky lady. My question my toenails came off from taxol. How long does it take for them to come back. What about hair? Thanks

    • Pam, congratulations on being done with chemo! YOU DID IT! So happy
      to hear it shrunk the tumor and did its job! Women who have lost toenails
      tell me it is a long time before they come back…like a year or more total.
      Hair – within 3 months after chemo ended, I had duck fuzz. Within 6 months
      I had what looked like a cute short haircut. By the year mark, my hair looked
      really, really good…

      • Denise, thank you so much for sharing all this wonderful information! Pam, congratulations! I’m so happy for you! I was diagnosed with Stage 1 breast cancer (no lymph node involvement) and had my first chemo treatment on Dec. 26, 2011. After that regimen, I had radiation. Then I was given a 3 month break, with a clean mammo before having a PET scan. That scan showed 2 tumors on the chest wall, and two spots on the liver. Then I was put on Herceptin/Taxol. I have my last treatment next month. My tumor marker was going up 10 points per month. So my onco had me get a PET scan last week. This PET scan showed no activity in the chest lymph nodes, one spot on the liver was completely gone and the other was inactive as well. I am thrilled! The onco sounded so excited also. :)

        But what I wanted to address was the fingernail/toenail issues. I found nothing anywhere that talked about this. My toenails are indeed discolored and one is trying to come off as we speak. My fingernails are in bad shape. Anything, the least little thing I do, results in a nail breaking, almost in layers like peeling an onion. It’s like they are so soft. Even with being careful and not using them for anything, the ends become ragged and need filing.

        It’s hard for me to tell how many of my symptoms are from the chemo and how many are from the syringomyelia I have. That is a rare neurological disease which also has many neuropathic type symptoms.

        But anyway, Pam I’m so excited for you! I hope one day soon to be able to say I’m in complete remission.

        and thank you, Denise, for putting this wonderful blog up. Sending love to all.

  68. Hi Denise, I completed my chemo regime on 25th March! Delighted to be over and done with it but I do need to ask you or any of your followers if any of them had a problem with weight gain after taxol? I did 4 sessions of A/C which I was ok with followed by 12 weekly sessions of Taxol. Initially it was all fine but towards the end I became extremely bloated! I have a stone and a half now that I cant seem to shift. My oncologist told me that taxol can do this and it will settle down in time and the swelling is edema!!! I’m doing everything I can to reduce the weight but nothing seems to work. I have a wardrobe full of clothes that do not fit me!
    I’m delighted to be over the chemo and will be having a mastectomy on Monday next which I not looking forward too but I know I’ll be fine. Its just when I’m feeling so vulnerable at this time I could do without this massive weight gain and if any of you or your followers can suggest any tips for me I would be delighted.
    Thank you so much for listening :-)

    • So glad you are through with chemo! Such a major accomplishment! It is common to have
      the bloating after Taxol – plus residual side effects from all the steroids. Just keep drinking
      as much water as you can which really does help. My ankles and feet swelled up a lot after Taxol…
      My Oncologist kept telling me to give it more time. Maybe others have more suggestions!
      Good luck on your surgery. It is not a hard surgery physically as a rule. Obviously, the emotions
      are more challenging to say the least! You are making it through the dark tunnel and getting to the
      other side!

  69. I am glad I found this blog. I am currently in remission from Stage 3B DCIS. I was diagnosed in 2011. I am looking for other people that have delt with Chemo, Radiation and Herceptin treatments and moving forward. I am having difficulty dealing with a lot of issues right now.

  70. Hi denise one more chemo to go.have a bit of the runs this morn but i was constipated for 3 days so i hope it is normal.

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