Taxotere and hair loss. A survey
My doctor suddenly switched me to Taxotere from Taxol yesterday because I had a Taxol rash and the thing that concerns me is the potential for permanent hair loss. It seems like there is very little info out there and my oncologist said that she has personally never seen that in one of her patients even though she prescribes it often. I thought I could put out an informal survey to gain from insights. I am not an expert and this would not be anything medically accurate but I think that us supporting each other by sharing info can't be a bad thing. I will start and you can cut and past mine and change the answers to yours. Thanks in advance for participating
1. How many Taxatore infusions did you have? I had one and will be having 2 more. They are to be 3 weeks apart
2. Did you have other meds with it? No. I had 3 Taxol a week apart before and will have 4 AC two weeks apart after
3. Was your thyroid checked? I have had a slow thyroid for the past 10 years and take a synthroid every day
4. Did you drink a bunch of water with the chemos? No I don't think I am drinking enough. Trying
5. How was your food and exercise during chemo? I am eating very healthy, fruits and veggies and at least 30 minutes of exercise daily
6. How do you feel during chemo? Even with side affects I feel great!
7. Do you feel supported/loved? Are you depressed and anxious? I am prone to anxiety but actually have been feeling good. Supported and loved
8. How was your hair before chemo? It was thin and thinning right in front. This runs in my moms family
9. Was your hair loss permanent? I don't know yet. Only in my first month of a five month chemo regimen. Hair was falling out after third Taxol treatment
10. What did you try for your hair and did it work or not? I didn't do cold capping but considering it now for remaining Taxol. Wondering about rogaine
11. How sexy/attractive do you feel before and after treatment? Again too early for me to tell
12. Were you warned about hair loss being permanent with Taxotere? No I bought it up to my oncologist and she minimized it
13. What did I forget to list which could be important?
Comments
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1. How many Taxatere infusions did you have? 4.
2. Did you have other meds with it? Yes, cytoxan.
3. Was your thyroid checked? No, but I have it checked periodically.
4. Did you drink a bunch of water with the chemos? Yes.
5. How was your food and exercise during chemo? Good, and I walked every day.
6. How do you feel during chemo? Fine. A bit tired.
7. Do you feel supported/loved? Yes. Are you depressed and anxious No.
8. How was your hair before chemo? Normal fine, straight hair.
9. Was your hair loss permanent? No.
10. What did you try for your hair and did it work or not? Nothing.
11. How sexy/attractive do you feel before and after treatment? The same as always, though my libido is lower.
12. Were you warned about hair loss being permanent with Taxotere? Yes.
13. What did I forget to list which could be important?
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Thanks ksusan. So glad to know your hair came back!
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1. How many Taxatore infusions did you have? I had 4 infusions, 3 weeks apart
2. Did you have other meds with it? Yes. Cytoxin.
3. Was your thyroid checked? Not that I know of.
4. Did you drink a bunch of water with the chemos? Yes- 3 liters per day. Enough to feel pretty sloshy.
5. How was your food and exercise during chemo? i walked about 30 mins most days. I ate whatever didn’t taste worse than cardboard. For whatever reason dried pineapple, cashews and blueberries tasted pretty good.
6. How do you feel during chemo? Chemo day was fine. The next 3-5 days were draggy, then it improved from there, until it started all over again.
7. Do you feel supported/loved? Are you depressed and anxious? supported and loved, yes. Both my husband and daughter were (and still are) great support. Anxious and depressed-no. Periodically concerned about a recurrence, yes, but not anxious or depressed.
8. How was your hair before chemo? thick and wavy.
9. Was your hair loss permanent? no. My hair is now thick and curly.
10. What did you try for your hair and did it work or not? I started taking biotin once I finished chemo. Not sure if it helped or not.
11. How sexy/attractive do you feel before and after treatment? pretty much the same.
12. Were you warned about hair loss being permanent with Taxotere? i was told about it, but it was minimalized.
13. What did I forget to list which could be important?
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In the end I did not have Taxotere. However, when we were discussing that recommendation my (then) MO said nothing about the risk of permanent hair loss. On the other hand, she was careful not to state that it WOULD return, just that it "usually" did so.
At the same time when I asked about cold capping she said it was permitted but she'd never seen very good results from it, which I find hard to believe as I know many women find it helpful, if not 100%. My suspicion is that having cold-cappers in the infusion suite is a hassle for the nurses/staff and is ever so subtly discouraged. In your situation you'd probably want to talk to the cold-cap co. rep. since you're changing chemos in mid-stream.
Good luck with all of it.
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Thanks for posting LimnoGal. Hopeful 2014, the cold cap companies said not to start cold capping after already starting treatments. The same concerns my onc had about frost bite
Glad you ended up not having Taxatore and that your doctor was honest. Mine has said its very rare and I had to bring it up. I hope she is right -
1. How many Taxatore infusions did you have? 4 treatments every 3 weeks
2. Did you have other meds with it? Yes Cytoxin
3. Was your thyroid checked? Yes. My endocrinologist did thyroid blood work during chemo and all normal.
4. Did you drink a bunch of water with the chemos? I drank water during infusions but had a hard time drinking water in days post infusions due to nausea.
5. How was your food and exercise during chemo? For about four days after each treatment carbs were all I could stomach. Some taste bud issues cause aversions to some foods too. About a week to 10 days after each treatment I could exercise again and would run and bike.
6. How do you feel during chemo? Crappy for about 4/5 days then felt good. It was cumulative for me and last treatment was the worst with side effects lasting longest.
7. Do you feel supported/loved? Are you depressed and anxious? I did feel supported. Am anxious and and some depression since dx.
8. How was your hair before chemo? Thick and loved my hair.
9. Was your hair loss permanent? No it is growing back.
10. What did you try for your hair and did it work or not? Did nothing. Had it shaved when it started coming out in clumps which was day 14 after first infusion.
11. How sexy/attractive do you feel before and after treatment? Prior I loved my hair and felt very confident re my appearance. Now I hate my hair/ appearance although I'm thankful it's growing in. It could just be time will change this.
12. Were you warned about hair loss being permanent with Taxotere? I asked my MO prior and he said my hair will fall out but in his practice he's never seen permanent hair loss. He said it could happen but is rare.
13. What did I forget to list which could be important? One odd thing which I was not aware of was although I lost all hair on my body, my eyelashes and eye brows did not fall out until six weeks after my last infusion. All of a sudden one day they fell out. I thought I was in the clear and then they just fell out long after treatment ended. They grew back but it was a delayed falling out.
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Changing your drug midway through treatment sounds extremely stressful. I know I researched my drugs to prepare myself and would have been scared of any changes.
I will say a special prayer that you transition over without too much stress or complications.
1. How many Taxotere infusions did you have? 6 treatments every 3 weeks
2. Did you have other meds with it? Yes Adriamycin and Cytoxin every 3 weeks
3. Was your thyroid checked? No
4. Did you drink a bunch of water with the chemos? I drank at least 6-16oz bottles every day. Still do.
5. How was your food and exercise during chemo? I ate anything that was soft and flavorful. I had severe mouth sores so I was limited for at least the first week after each infusion. Never had any noticeable nausea. I walked at least 2 miles every day except days 3-6 which I experienced substantial bone pain from the Neulasta injection.
6. How did you feel during chemo? my hard days with bone pain and exhaustion were days 3-6 each treatment. Other than that, I was a little more tired than normal but it did not stop me from doing what I wanted to do. Of course the day before and 2 days after I was wired from the steroids.
7. Do you feel supported/loved? Are you depressed and anxious? I was very supported by my husband, my daughter who lived close by and my church family. I probably had some periods of depression but it did not rule my life. I had a low level of anxiousness, the unknown can be scary. I did not need any drugs though. My therapy was this website.
8. How was your hair before chemo? Thick, wavy and lots of grey.
9. Was your hair loss permanent? No it grew back nicely.
10. What did you try for your hair and did it work or not? i had it buzzed at day 16 when it started coming out in handfuls. I had my wig waiting at the wig shop so she buzzed my scalp and cut and styled my wig. I did shampoo my scalp every other day just like I had real hair. This was suggested to keep it clean and massage the roots of the few hairs that never fell out. I needed a trim to even out my new hair at about 4 months after the last infusion.
11. How sexy/attractive do you feel before and after treatment? I feel about the same now as before. It did take time. My complexion was not as vibrant after chemo it took about a year to get my skin texture back. I lost my eyebrows and lashes and took about 3 months to recover. As stated by someone else, I did not lose my brows and lashes until about three weeks after treatment ended. It took about a year for my hair to return to pre chemo color and texture. It initially came in really kinky curly then it loosened up and became straighter and courser. Eventually it softened and got wavy. I did end up with my original color with lots of grey.
12. Were you warned about hair loss being permanent with Taxotere? My MO's oncology nurse discussed this during my chemo teaching session. I was warned it was possible but in their practice they had never had a patient with permanent hair loss.
13. What did I forget to list which could be important? The one thing I would mention is how important it is to stay away from germs especially the first 10 days when your WBC could be very low. I avoided crowds during this time frame, I wore a mask if I had to go into a clinic or school.
I did ice my fingers and toes with frozen peas and chewed crushed ice for my mouth. I still ended up with permanent Neuropathy in my feet. Luckily it is only my toes and ball of foot. It still aches. I also lost both of my big toenails and it took over two years to grow back out. Make sure you take care of your nails.
You asked so I answered. The good and the bad.
Hopefully you do not have any problems.
HUG
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1. How many Taxatore infusions did you have? 6 every 3 weeks
2. Did you have other meds with it? Yes, Carboplatin, Herceptin and Perjeta
3. Was your thyroid checked? Not during chemo but after and it is fine.
4. Did you drink a bunch of water with the chemos? No I tried but didnt get enough.
5. How was your food and exercise during chemo? Fine at first but by the end not much good. Tolerated carbs and tart things like lemonade.
6. How do you feel during chemo? Pretty good. Tired by the end but worked throughout.
7. Do you feel supported/loved? Are you depressed and anxious? I also am prone to anxiety tried to keep in check so kids didn't worry. Husband was generally helpful.
8. How was your hair before chemo? It was very, very thick.
9. Was your hair loss permanent? Ni but it is now very thin. It was very slow to grow back.
10. What did you try for your hair and did it work or not? Nothing during chemo. Am using Rogaine now.
11. How sexy/attractive do you feel before and after treatment? Not feeling very attractive now but i think that's more because I've been on eating more in the last year.
12. Were you warned about hair loss being permanent with Taxotere? No I bought it up to my oncologist after treatment when I heard about it. He said none of his patients had permanent hair loss although his PA was very surprised at how slow mine came back.
13. What did I forget to list which could be important?
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I suffer from permanent hair loss 6 years post Taxotere
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1. How many Taxatore infusions did you have? I had 7 Taxotere
2. Did you have other meds with it? Yes Herceptin and Perjeta
3. Was your thyroid checked? PCP checked..normal
4. Did you drink a bunch of water with the chemos? Yes and chewed ice during Taxotere infusions
5. How was your food and exercise during chemo? I eat fair amount of vegetables , admit to wine.
6. How do you feel during chemo? Day 3& 4 felt very bad...now just fluish a lot. Still on H&P.
7. Do you feel supported/loved? Are you depressed and anxious? Fairly well supported
8. How was your hair before chemo? It was in great shape
9. Was your hair loss permanent? No, but at 3.5 years on H&P very thin in front.
10. What did you try for your hair and did it work or not? Intermittently used romaine but to be fair I didn’t stick with it.
11. How sexy/attractive do you feel before and after treatment...yuck
12. Were you warned about hair loss being permanent with Taxotere? No, nothing said. But Taxotere knocked out multiple tumors so I will not fuss about thinning front. I would feel angry if it did not grow back and there had been an alternative that I wasn’t offered
13. What did I forget to list which could be
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Thanks everyone for contributing. While most people got their hair back it does seem like some people are permanently affected. Wonder why all the oncologists have the same response that they have never had a patient with permanent hair loss/ it seems hard to believe.
I feel really sad today. My hair is falling out my the handfuls and I am feeling some neuropathy. Also its too cold to go for a walk outside. Losing hair is traumatizing but lately I have been looking at my young sons and just feeling like breaking down crying. They are too young to lose their mother. I am at peace with dying but want my sons to be grown. Even if I look ugly with no hair I suppose its okay as long as I'm here for them.
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1. How many Taxatore infusions did you have? 4 at 3 week intervals.
2. Did you have other meds with it? Cytoxan
3. Was your thyroid checked? No
4. Did you drink a bunch of water with the chemos? Yes
5. How was your food and exercise during chemo? I eat healthy, exercise, do yoga and walk at least 5 miles a day.
6. How did you feel during chemo? 2-3 days after treatment I felt a bit tired and achy (I think that was the Neulasta shot), but after that I was fine til the next treatment ment.
7. Did you feel supported/loved? Very much so. Was I depressed and anxious? Not at all. I really think the exercise kept me from being angry and sad and depressed.
8. How was your hair before chemo? Healthy
9. Was your hair loss permanent? No. I finished chemo in early September and though it’s very short I have a full head of hair.
10. What did you try for your hair and did it work or not? I used castor oil on my head every day. Took Biotin and used baby shampoo to stop the itching and bumps after my hair started growing back in.
11. How sexy/attractive do you feel before and after treatment? I felt and still feel very attractive.
12. Were you warned about hair loss being permanent with Taxotere? No, but I had read about the possibility online. That did concern me
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1. How many Taxatore infusions did you have? 6 at 3 week intervals.
2. Did you have other meds with it? Cytoxan and Adriamycin
3. Was your thyroid checked? No
4. Did you drink a bunch of water with the chemos? Tried
5. How was your food and exercise during chemo? First two they were fine. Three through 6 wiped me out.
6. How did you feel during chemo? First two I was fine (hair fell out exactly two weeks after first treatment. Had a Neulasta injection the day after each chemotherapy treatment. Bones ached pretty badly.
7. Did you feel supported/loved? Very much so. Was I depressed and anxious? I had a lot of support. I was too tired after treatment 3 through 6 to waste energy being depressed.
8. How was your hair before chemo? Healthy - thick and shoulder length
9. Was your hair loss permanent? Yes. It is three years since my last chemo and almost three since the last radiation treatment.
10. What did you try for your hair and did it work or not? I have been taking Biotin. There is not much else you can do as I do not want to use anything that could cause the cancer to recur.
11. How sexy/attractive do you feel before and after treatment? I felt very attractive before not so much now. I HATE wearing a wig - they are just not comfortable. I wear ball caps during the Spring, Sumer and Fall. Knit caps during the winter. I have hair that grows in around my head but not on the crown. Last four months I have shaved off the fringe hair as it looks worse than no hair at all and have gone out with no hat. It doesn't bother me (I worry more about making other people uncomfortable). At least I have a pretty round head. I am 71 but I am not ready to no longer be attractive. I am taking arimodex for 5 years and I think that makes your hair thin. At least I do not have to worry about that. I am hoping to see that someone whose hair still had not grown back for a few years finally began to grow back. Sometimes not having hair makes me sad.
12. Were you warned about hair loss being permanent with Taxotere? No I did not know what chemo I was getting to the day I received it. Not sure what I would have done had I known.
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I feel heart broken for you Ltaylorn. So glad that you are healthy but it is really sad to lose hair. I am sure you are still beautiful. Hugs
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