The End of Paclitaxel (Taxol) for Breast Cancer by Diann

Denise, Diann’s son, Tyler, and Diann

Special thank you to my sister, Diann, for writing this Blog Post to share her experiences with Taxol during her 5 months of chemotherapy for Stage 3 Breast Cancer.  She had her last Taxol on October 20, 2015     Denise

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First, I would like to thank all the women out there who have written Denise, my sister, about my breast cancer diagnosis and sent your prayers and support. It means so much to me! This road is only understood by someone who has walked the same road!  I told Denise I thought I understood breast cancer treatment because I watched her go through treatment.  Going through it myself, I realize I had LESS THAN a 5% understanding of what extreme suffering a breast cancer patient goes through!

When my sister first asked me to write a blog post about my experiences with Taxol, I was a little hesitant as I had never written a blog post.  But, I will give it a shot.  These are my experiences with Taxol (Paclitaxel)- I had the 12 weekly dose version as my Oncologist said they have find there are less side effects by spreading it out.

I have found all of chemotherapy to be very trying. Adriamycin Cytoxan chemo did not treat me well. I felt like giving up. . Everyone told me Taxol would be better, and while it is better, it is not as good as I had thought it would be in my head! And because of that, I struggled with acceptance of the road I’m on.

I get chemo on Tuesdays. The thought of going and preparing for chemo is always worse than getting the actual infusion. After the infusion, I feel quite good and can go out to eat on the way home. I don’t sleep well on Tuesday nights though—I feel like I’ve had 12 cups of coffee! I’m told it’s  the steroids.  I am on an extremely low dose of steroids, the chemo nurses told me, however.  So I am grateful for that aspect!

Wednesdays I still feel pretty good, though fatigue hits after work. On Thursdays, I wake up fatigued, but I do go to work and manage about 5-6 hours. After struggling to get home, I’m in the recliner with my feet up. It seems like I live in that recliner.  Fridays and Saturdays are the same – living life from the recliner!

I watched Downton Abby, the award-winning PBS series to pass some of the time in the chair. So I pulled it up on Amazon Prime, and I watched all five seasons (like 50 episodes) in two weeks!  That tells you how much sitting I do!

I did have one Tuesday when I got the flu (vomiting, diarrhea, and a low grade fever). I was seeing the doctor that day for my infusion so I went, not knowing if the side effects I was having was the flu or just a side effect of chemo. They sent me to their cancer urgent care area and gave me 2 hours of fluids and meds to stop the diarrhea. No chemo that day! And the result was after the flu passed in a couple of days, I felt better than I had in months. This was a welcome break for me.

Here are the side effects I experienced during Taxol:

Heartburn often very severe

Extreme fatigue

Significant Coughing and mucous

Bloating

Some nausea and gagging

Chemo rash on my face

Constipation and diarrhea

Then even MORE Fatigue

High heart rate (110+)

Elevated liver enzymes

My blood counts stayed really good throughout Taxol, so said my chemo nurses.  I tried not to pay too much attention to them as it would make me feel worse!  Everyone is different in this area!

My Food Cravings:

During AC – hot dogs and onion soup (salt I guess)

During Taxol – Tomatoes, watermelon, more onion soup

I’m trying to drink 68 oz of water a day (especially the 3 days following chemo) and taking a regular Claritin daily. I’m hoping the water will flush out the chemo (I hate smelling it in my urine!) and the Claritin stops the cough I developed.

I do ice my hands and feet during chemo. I did this one for my sister! I didn’t want to do it because I would have rather reclined in the chemo chair and relaxed during the chemo infusion.  Denise finally convinced me it would definitely help me from losing fingernails and toenails, and maybe even help or stop neuropathy which is a common side effect of Taxol.  As of my last infusion,  I still have finger and toe nails with occasional numbness in my hands and feet which comes and goes.  My Physician’s Assistant said it is okay if the neuropathy comes and goes, but to let her know immediately if it stays.  So far, I am happy to report, it has not stayed.

Let me say I’m very happy to be closing the door on Taxol.  Wiith God’s grace, I won’t be back.

My next step is Radiation.  I will let you know my experiences with Radiation.

25 things to do for a Cancer Patient

I’m always being asked, “what should I do for a cancer patient??  My answer is always the same:  “It doesn’t matter what you do, but please do something!”  Every kindness is never forgotten.  Many friendships are lost because cancer patients are ignored during treatment.  Being 3.5 years out from Chemotherapy, I have never forgotten one kindness extended to me.  Watching my sister go through Chemotherapy, it becomes even more real. And I learn from my sister that many cancer patients are stubborn!  When I ask my sister, “What can I do to help you?”  her usual response is, “Nothing, I’m trying to act normal.”  Knowing firsthand, there is no normal during chemotherapy, I ask her:  “How is that working for you?”  Finally, I get truth from her when she answers, “Not very well.”

If a friend or loved one is going through chemotherapy, trust me, they can use some help and lots of it!  Here is my Top 25 list of ways to help:

1)  Offer to take them to Chemotherapy and give them dates that you are available to do so.

2)  Drop off muffins at their front door — most cancer patients can manage to eat a muffin.  Lower fat content is best.

3)  Money is always an issue with 98% of cancer patients.  Cancer is so expensive no matter what insurance they may have.    A grocery store or drug store gift card, no matter what the denomination, would be extremely helpful.

4)  Send greeting cards and send more than one.  One of my dear friends sent me a card every week for one year!!

5)  Flowers are always welcome but ask the florist to send the least fragrant kind.  Some cancer patients are not able to be around fresh flowers, so if in doubt, ask a family member before sending.

6)  Mow their grass.

7)  Drop a small gift at their front door.  Often the cancer patient is just not up for visitors.  But a small gift will bring much hope.  I found many a gift just sitting at my front door!  What joy it brought me!

8)  Offer to weed their garden or water their flowers during warmer months.  My cousin and her husband came and planted my outside flowers when I was too sick to do so.  Their kindness still brings tears to my eyes.

9)  Offer to pick up groceries for them.  Going to the grocery store is one of the most challenging things during chemotherapy.  A dear friend of mine called me every week to see if I needed anything.

10)  If they have children, offer to watch the kids, offer to take the kids to school, or pick them up for school events.  This is so helpful for moms going through chemotherapy especially on their worst days.  Moms going through chemo are the women I most admire!

11)  Drop off soup or a casserole for the family — if you are dropping off food for the patient, be sure to ask what they are able to eat.

12)  Send them a cute chemotherapy hat as a gift.  This will lift their spirits.  Check them out at my online store I will include a gift note card and special gift wrapping at no additional charge.

13)  Pedicures and manicures are not allowed during chemotherapy because of the risk of infection.  If it is a close female friend, offer to paint her toenails or fingernails.

14)  Offer to clean their house for 2 hours.  Set a time limit because staying too long will exhaust the patient.   Cleaning is on the bottom of the list of things cancer patients are able to do.  Offering to sweep for them, dust for them, or change their bed clothes would be much appreciated!!

15) Do their laundry.

16)  If they have a cat, change their cat litter for them.  Chemotherapy patients are not supposed to change cat litter because of germs!  This is something I do for my sister on a regular basis which she greatly appreciates and so does her cat!

17) Many agencies offer services or food or money to cancer patients, but the cancer patient does not have the energy to pursue this.  Do it for them, but be sure to ask their permission!!

18)  Send a card to their spouse or significant other to show they are not alone. The cancer patient will so much appreciate your support of their caregiver.

19)  If the cancer patient needs constant care, offer to sit with the cancer patient to give the caregiver a break.

20)  Offer to fill their gas tank or wash their car!

21)  Tie balloons at their front door to cheer them up!  I will never forget my aunt tied a “Congratulations” balloon at my front door on my last day of chemo!  It still brings me joy to think of it!

22)  Send them a list of things you are able to do for them with your telephone number – let them know you are really serious about helping them.

23)  Ask them if you can research something for them – often older patients who don’t access the internet, don’t know things that will help them feel better during chemo.

24)  Take out their garbage, especially if they live alone.  I finally got my sister to admit this was extremely hard for her to have the energy to dump her wastebaskets and haul her garbage can and recyclable bin to the street for garbage pickup.

25)  Ask if they are up for a 30 minute visit.  Do not stay too long.  It is very tiring for the cancer patient, but a short visit helps lift the spirits!

Lifetime Dosage – Adriamycin Cytoxan – AC Chemo

As the chemo nurse came in to administer #4 out of 4 Adriamycin Cytoxan Chemotherapy to my sister, Diann, she said:  “Good news!  This is the last of your lifetime dosage of Adriamycin Cytoxan!”   Diann, who is going through treatment for Stage 3 breast cancer, was beyond relieved that she never has to get another dosage EVER of the Red Devil.  It is so strong that your lifetime dosage is measured!  What an accomplishment to finish that drug.  But the grueling side effects remain for quite some time before Diann begins Taxol, her next drug for 12 weeks. Any of you who have been through AC, know that you feel like dying through Adriamycin Cytoxan chemotherapy.  I certainly did.  When women write me for encouragement getting through AC, I tell them it is normal feelings to want to give up and die.  The drug does that to you!  It is torture, but it kills cancer cells – along with a lot of good cells.  You feel the death of all of them.  But once you are 3 years post-chemo like I am, you never take a day for granted that you did it, that you did not give up, and that you are still alive!  Diann and I did it and you can too!!

Here is some advice from Diann for those going through AC Chemo:

1)   Infusions –  #3 AC is the worst both emotionally and physically.  By the time you get to #4, you are so glad it is over, mentally you are better able to handle it.

2)   Mouth sores and metal taste – Biotene really helped me.  It can be purchased over the counter.  But make sure any nausea has subsided before you rinse your mouth with it or I would start gagging.

3)   Dry heaves and nausea –  be sure to take your anti-nausea meds ON TIME even though most Oncologists say “as needed.”  Don’t wait because you think you are okay.  The nausea will sneak up on you and then it takes much longer for the medicines to work.  If one medicine doesn’t seem to be working for you, call your Oncologist.  They can prescribe many other anti-nausea meds to help you.  Compazine worked for me better than Zofran.  But Zofran worked better for a friend than Compazine.  We are all different!

4)  Good Days – If you are having one of those rare good days, get out of the house and do something that you enjoy!  Even if it is just a change of scenery over to a family or friend’s house because of low energy and sit in their recliner rather than yours.  Anything helps to get off of the sick bed, couch or recliner!!

5)  Energy – Plan anything that needs more energy in the morning while you have it.  If it is necessary for you to go to the grocery store (try to get someone else to do it, though), do it in the morning.

6)  Work – If you are attempting to work through AC Chemo, try to make it part time.  Fortunately, my boss was very flexible.  I was able to work for 4 or 5 hours on the days I could.  During AC #3 and #4, those days became less.  But I did find it helpful to go to work as it made me feel more “normal” for a little while.  On my best days, I only lasted until 2:00 pm.

7) Naps – Take them as needed and take them as often as you can!  It really helped me both with nausea and energy.

7)  Children – As a single mom who raised 3 children on her own and now I am a grandma, I kept thinking of women going through AC Chemo who had small children and wondered how they do it.  If you have small children, you will need help and lots of it.  Say yes to the people who offer to help you.  Little kids give you energy as well, but you definitely will need help.

8)  Accepting Help – And speaking of accepting help, it will be most challenging, but learn to receive.  I needed help and absolutely hated to ask for it.  But I had no choice on some occasions.  This was one of my biggest lessons.

Diann gets tired of people telling her she looks great when she has her hats and headgear on from my online store http://www.hellocourage.com  because she feels so bad physically.  But we can all agree, she does look amazing even during Chemotherapy!!  Diann’s favorite headgear from my store is the Breezy Collection which she can wear over a wig like she has done in this picture!

Click on her pic to get to my store and in Diann’s honor, get an additional 10% off already discounted prices with Discount Code   DIANN

Adriamycin Cytoxan AC Chemo – Understood Less Than Five Percent

My only sibling, my sister, Diann just had her first Adriamycin Cytoxan (AC Chemo) Infusion this past week for Stage 3 Breast Cancer.  This drug is so hard it is called “Red Devil” and “Red Death.”  It was beyond challenging for me to watch her get the tubes of Adriamycin Cytoxan pushed into her veins in the same chemo chairs that I was sitting.  Five days into her first infusion, Diann called me with deep emotion in her voice.  “Denise, I owe you an apology.  I’ve been thinking about this.  I had less than a FIVE PERCENT understanding of what you were going through during chemotherapy.”  

Looking at that graph put things into perspective for me.  Now, Diann was with me often during my own chemo struggles – she was there for Mastectomy surgery, for port placement, several times to infusion, to Oncology checkups, she cleaned my house, she drove me places when I was too weak to do so, and she called me several times a day every day for the duration of my treatment.  And after all that, the fact that she understood what chemo was like less than 5% amazed me and brought much clarity.

If you are going through Adriamycin Cytoxan Chemotherapy or any chemotherapy right now — be encouraged when family, friends, and strangers say what seems like stupid stuff to you, don’t offer to do anything to help you, or ignore you out of their fears. Remember my sister’s words:  “I had less than a FIVE PERCENT understanding of what you were going through during chemotherapy.”  Perhaps it is your husband, your child, your mother or your best friend who has abandoned you.  Try to give them the benefit of the doubt, because they absolutely have no idea what you are going through.  Chemotherapy is one lonely road.

My words to women going through Adriamycin Cytoxan Chemotherapy always include this:  “No one can understand what you are going through no matter how kind or compassionate they are unless they have been through it.”  My trusted sister’s words to me made this even more clear.  I hope it helps you as well.

Diann has amazed me thus far exhibiting a determination and strength that make me wonder if I had half of what she has.   I was always been a medical sissy up until cancer, so her stamina has shocked me!  Diann has what it takes to get through Chemo. But it is just so damn hard.  Diann is more than strong.  She has been going into work for 5 hours per day on weekdays, has already learned you have to store up what little energy you have, and have to rest or you will just pass out in a heap.  She told me she felt like a little child today when she either had to lay her head on her desk and sleep or go home. She went home.  Diann has learned that you have to save up all your energy for the day to just stop for milk since going to a grocery store seems almost impossible.  This morning she told me she thought about a small grocery store in her neighboring town that is about one-fourth the size of the mega grocery stores.  Diann was excited to see if she could pick up orange juice and bread and felt that store might come in very handy.

If you are going through chemo, you definitely understand about how daunting grocery stores seem!  You will make it through!  You and Diann can do this.  You can get to the other side.  If you feel like giving up today, keep going.  Tomorrow will be better.

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Diann will be shaving her head after her next infusion since on average the hair starts to go 14 to 17 days after chemo begins. Thankfully, she has a good selection of caps and scarves from my online store  http://www.hellocourage.com to get her through her bald days. I told her being bald will be better than she imagines. Thinking about it is the most difficult part.

Correct Chemotherapy Dosage When Overweight or Obese

As a plus size woman who has struggled my entire life with weight issues, I have been reading with interest the research of Dr. Jennifer Griggs who is an Oncologist and Director of Breast Cancer Survivorship Program at the University of Michigan where I receive my care for breast cancer.  In October, 2013 her ongoing research and the research of others made international news.

Dr. Griggs has studied the topic of whether overweight and obese patients are getting the correct chemo dosages according to their BMI (body mass index) since 2005.  Very often patients are not getting appropriate dosages as this news story from CBS news outlines:

http://www.cbsnews.com/8301-204_162-57603715/

As a patient at the University of Michigan, I always knew I was getting a chemotherapy dosage based upon my weight.  There was a big ritual that was gone through every time I received chemotherapy.  I was weighed not once but twice on two different scales (every overweight patient’s nightmare), a little bit of a panic by your nurse if you lost 5 pounds, calculation by Oncology Nurse Practitioner of your chemo dosage according to current body weight and communication to the Pharmacy, and a rechecking of dosage by two RNs before the dosage was administered.  They calculated my individual dosage according to BMI, had their computer calculators out, checked, double checked and rechecked, and they did it out loud so I could hear it,  showed me the calculations and asked if I had any questions.

But apparently, according to Dr. Griggs’ research, this is not standard procedure every where in the world.  Often overweight and obese patients are shorted chemo dosages.    It makes logical sense that someone who weighs 250 pounds should get more chemo than someone who weighs 125 pounds.  However, giving the correct dosage according to weight can be problematic for overweight patient due to increased side effects.    Since I had a heart attack during Adriamycin Chemotherapy, my heart was at greater risk because of the higher dosage of drugs I received.  On the positive side, however, studies show that heavier patients are less likely to develop dangerous, low blood counts from cancer treatment, and that they clear chemo drugs more quickly from the body than thinner people do.

No matter what weight you are, make sure you ask your Oncologist the question about how your Chemotherapy dosage is calculated and what is the right dosage for you.  IF YOU DO NOT GET ANSWERS that feel right to you, seek a new Oncologist immediately.  Your life depends on it!______________________

Please check out my online store for new items – like cute winter hats!  www.hellocourage.com

Adriamycin and the heart…

Adriamycin (Doxorubicin) does cause heart attacks and heart failure.   I had a heart attack while going through Adriamycin as the heart damage is evident on all my heart tests and confirmed by three Cardiologists.  The vast majority of emails I get from readers of my blog have to do with Adriamycin Cytoxan Chemotherapy known as the “Red Devil”.    There doesn’t seem to be any rhyme nor reason on why some women have very few side effects, and others have debilitating side effects.  Now I have to give you more bad news to watch for serious heart side effects and not overlook them.

I had symptoms of a heart attack during Adriamycin, but thought it was side effects.  Clearly, I remember the night with shoulder pain, chest pain, and sweating. From then on walking up my steps, I had to rest every other step I was so out of breath.  Immediately, I developed a serious cough and even more fatigue.  You might ask, “Why didn’t you do something?”    Well, in my case the side effects of AC were so bad this seemed normal to me.   I never even mentioned this to my Oncologist as being out of breath is normal on AC.   My heart rate also elevated to 112 beats per minute which also can be normal during AC.

Thank God my Oncologist sent me to the Cardiologist when my Echocardiogram came back with “scary bad results” to quote my Oncologist.   We all blamed it all on Herceptin, but looking back, the symptoms were during Adriamycin.  Herceptin just added to the damage.  The Cardiologist immediately put me on heart meds.  After 10 months of heart meds, my heart has greatly improved I am thrilled to report. 

MD Anderson, the #1 cancer hospital in the USA, recently completed a study about heart failure and Doxorubicin (Adriamycin) with some amazing findings discovering the molecular basis for Doxorubicin’s damage to the heart.  It explains why some people can have a very small dosage of the drug and still get heart damage, yet others who have large doses have no heart trouble:

“Even in this age of targeted therapies, doxorubicin remains an effective agent used mainly in combination with other drugs against a variety of malignancies, including breast, lung, ovarian and bladder cancers,  as well as leukemia and lymphoma,” said Edward T.H. Yeh, M.D., professor and chair of MD Anderson’s Department of Cardiology and senior author of the study.

“However, its use is limited by its cardiotoxicity, which can lead to heart failure,” Yeh said. “We’re excited because we’ve identified the molecular basis for doxorubicin’s damage to the heart.”

The full article can be found here:   http://www.mdanderson.org/newsroom/news-releases/2012/key-discovered-to-how-chemotherapy-drug-causes-heart-failure.html

Because of their findings, MD Anderson is undertaking yet another study to determine if a simple blood test could tell a patient’s risk for cardiac toxicity during Doxorubicin (Adriamycin).   I find that to be absolutely incredible!

But as we wait for that to occur, if you are currently on Adriamycin, watch for these severe heart problems and let your Oncologist know immediately.  Do not hesitate to use that word “heart” when talking to your Oncologist.   If you have taken Adriamycin in the past, pay close attention to your heart.  After my experiences, I would recommend that you see a Cardiologist so your heart can be monitored.  Heart failure can happen many years after taking Adriamycin.

Has all of this been worth it?  Yes, I am still feeling better each day.  That is worth so much.  Do not get discouraged.  It is all overwhelming, but pay attention and speak up!

Icing Hands and Feet During Paclitaxel, Taxol, and Docetaxel, Taxotere Chemotherapy

I receive a lot of inquiries about Taxol (Paclitaxel) and Taxotere (Docetaxel), and icing your hands and feet during Chemo infusions, so I wanted to provide  more information.     Taxane drugs (Taxol and Taxotere) can cause neuropathy which is numbness of hands/fingers and feet/toes and extreme discolorations of your nails or loss of nails.

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.  Make sure you have their permission.  Your Oncologist may look at you questionably, but get them to say okay!  Mine gave me the go ahead.  In fact, it worked so well for me, they are now recommending it for others.  One more added bonus, you get so sleepy from the drugs pre-chemo.  The ice wakes you right up!

Mary, a friend of mine, is 10 years out from Taxol treatment.  Both of her feet are numb and this will never go away.  She suffers greatly because of this on a daily basis.  If you can prevent neuropathy, it is worth the sacrifices. On my first attempt at doing this in the Chemo room, a young gal next to me  was Stage 4 Breast Cancer had iced on several chemo regimes.  She attested to me that it worked for her, so that gave me encouragement I needed to continue.

Please check out my store www.hellocourage.com and cute chemo hats.  I learned what was needed in the bald phase of my life.  Click on a hat  below.  I look high and low and have the best chemo caps designed for comfort and style.

 

I am now 11 months since my last Taxol infusion.

1)  I have no neuropathy in either hand or any fingers.

2)  I had no nail discoloration or nail loss on either hand.

3)  My left foot had no nail discoloration or no neuropathy.

4)  My right foot has numbness on the upper tips of all 5 toes and I had one toenail discolored, but no nail loss.  I pulled my right foot out of the ice too often.

Here is what I did:

1)  I took two small dish pans to infusion purchased at a Dollar Store for $1.00 each.  Some people take frozen peas or baggies of ice.  The dish pans worked better for me.

2) Before the Chemo Nurse began the Taxol, I had her fill up the dish pans with ice.  I only used the ice during the Taxol infusion, not with the preliminary drugs.

3) I kept my socks on (brought an extra pair for after Chemo) and had the nurse give me a washcloth to put over the ice for my hands. (thin gloves would have worked as well)

4)  I soaked my hands and feet in the icy dish pans as long as I could tolerate it, then I would pull my hands and feet out of the ice for short breaks.   The nurse got me two towels to dry off when I was through.  I did it for the entire Taxol portion of the infusion.

With the annoyance the little bit of neuropathy causes me daily, I am so thankful I took the time to do this to prevent debilitating neuropathy.