taxotere and permanent hair loss

okblessed

Hi Marcy

I had an extreme reaction and the oncologist only adjusted the dosage 'down' both times.  He never offered to try another drug.

He is welcome to visit our website and I am sure my oncologist, Jess Armor, Cancer Care & Associates, Mercy Health Care, Oklahoma City, OK would be glad to discuss this side effect.

I was Stage III 9cm

moonwolf

marcy 4

I worried about side effects more than the cancer too!  My Onconlogist dreaded seeing me I think and hated all my questions.  However, chemo was much better than I thought.  I found FEC worse than Taxotere.  I finished chemo 12 months ago and my hair has come back.  I fancy it is a bit thin on one side of my scalp, but it may have always been like that.  It's OK though.

I was so terrified of Taxotere I cried when the nurse said my blood was OK to proceed. I have come out the other side.

Actually I was sooooo undecided about what treatments to do that in the end I tossed a coin!

Good luck with your decision and I do understand your worries.

marcy4

Met with my oncologist today and he was great.  Agreed that weekly Taxol was just as effective as Docetaxel and he understood my concerns and was total fine with a change.  We made plans to make the switch and then he made some phone calls.  Apparently CCO (Cancer Care Ontario) will not fund it, so I may be stuck with Docetaxel. He has made a special request and spent about an hour trying to take care of it. He will call me next week and let me know what they tell him.  I am hoping they will approve it.  Have put a called in to my member of parliament as well to get her involved if they say no.  It doesn't seem fair that I may not have a choice!

crazy4carrots

Marcy, suggest you pm Luah and find out the name of her oncologist, then ask your onc to get in touch with her/him to find out how to get weekly taxol approved.  (I assume he was referring to the weekly taxol, because bi-weekly taxol was certainly on the approved list 2 years ago). There are ways.....!

As for your second FEC tx:  you may find that your fatigue increases a bit with the second and third tx.  I think it's the cumulative effect of the chemo.  But you'll be finished with it before you know it!

Wishing you well and sending a warm hug too!

Linda 

anneoz

Good for you Marcy for questioning the use of taxotere.

I was treated with taxotere and my hair did not come back as promised. It is one year since I finished taxotere. I have very thin sparse hair on top of my head, a very high forehead, no eyebrows and minimal colourless eyelashes. In all that time my hair has grown about 1 inch on top (normally hair grows at 1/2 inch per month, so I should have about 5 inches, given that the hair would not start growing for the first 2 months).

It is one thing to imagine what it would be like to not have your hair back but the daily anguish we who have been so affected is unimaginable. Like others I have spent many months in this condition, overidden with anxiety and sadness and anger too. I have spent hundreds of dollars on getting professional counselling, appointments with dermatologists and for various treatments (which have not worked).

Bear in mind that most of the time doctors select treatment based on clinical trials, which usually are provided by the drug companies who ran the trials. 

If we want to have some impact, the drug company has to hear it from oncologists that patients are concerned about the risk of permanent hair loss so are refusing or questioning the use of this drug in favour of taxol.

bkglenn50

All ive got to say to this topic is, Taxotere saved my life!!!! Nuff said!!!

bkglenn50

Bald is better than dead!!!

enjoylife

Yes Brenda bald is better than dead but I am speaking for me and all my bald buddies we didnt have a choice of what chemo to take if there was anyone who told us there is a choice of going bald we could of made a choice, compare it to someone not telling you that something could give your baby your carrying a bad side effect and it would be your choice to use it or something else. I have been fighting this for up to 2 years and it is hard enough to fight cancer single and it has given me a death of part of my life I stay inside allot dont socialize allot and some of my budding on our site have been fight this for up to 6 years all over the US. Its great that you can live with out hair and be happy some not so dont be so judge mental on us we were never given a choice and that is not what life is about its about choices I hope you have a healthy happy life Brenda and for us we are trying to find a way to live with it every time someone says it will come back just slow it kills us a little more. Every time we have hope a shampoo or a massage will wake up our hair fol ices we get let down we die more and no one who has walked in our shoes can judge us my friends will b  ch about thier hair and its made a wall between us so its not about being alive at all...I even had someone suggest I go to counceling ok with her head full of hair there is no councler or no pill to make it go away or make it better....

Maura

crazy4carrots

Brenda - a recent study reported on another thread by Luah showed that, while there is not a great deal of difference between taxotere and taxol, weekly taxol has shown slightly better results.  Whether or not this refers to Stage IV, as you are, or just to the earlier stages, I'm not clear.

I was given a choice of 4 bi-weekly taxol or 3 tri-weekly taxotere.  I chose the latter, without knowing that up to 6% of patients on taxotere end up permanently bald.  As those on this thread have mentioned, being permanently bald changes one's life forever, to an extent that I cannot even imagine.

I'm very glad for you that taxotere has kept you alive.  So far, it seems to have worked for me, and I was very fortunate that my hair did return, but I  have deep compassion for those whose hair has not returned.

enjoylife

Thank you lindasa for your kind thoughts its all about choice no one wants choice taken away I know I would of went with taxol if it would of given me hair back but we did not have a choice now maybe we can help women so they can get a choice ..

Maura

bkglenn50

I wasnt trying to be judgemental at all. Maybe because i'm stage 4 I see things a little differently. Hair is just not important to me. Seeing my grandbabies grow up and watching my kids graduate from college are way more important to me. My onc did give me a choice and I chose Taxotere because it gave me a better chance with my mets. Hugs and Prayers...Brenda

hrf

I'm in the same situation as enjoylife. I had the taxotere. When the hair didn't start to grow back right away I asked and the onc said "hair always grows back" ... but it didn't. I'm almost a year PFC and I have very thin lifeless hair when I used to have very thick, strong hair. I cry a lot, I avoid socializing ..... it's awful!!! If I knew and had been given a choice, I would have chosen a different drug.

kittycat

Maura - Thanks for telling me about this thread.  since I'm not good with odds (being in the less than 1% that would get bc after a bmx for DCIS), I don't want to take my chances. 

Are there any odds like this for Taxol??  My sister took Taxol and her hair grew back in thick (she has thick hair) and curly.  I have fine hair, but a lot of it.  I would be sad if I ended up bald or having less hair.  Mine is already hard to manage sometimes!

THANK YOU FOR TELLING ME ABOUT THIS!!!!!!!!! 

kittycat

I'm triple negative.  Do onco's often prescribe Taxotere for triple negatives?  Are the people that experience permanent hair loss triple negative or are you a hormone positive or is it a combination of both (I will read through this thread more thoroughly later).  Has anyone  that's triple negative taken ACT instead?  My sister did ACT but she was hormone positive (which is odd because we're both BRCA1+ - same mutation). 

enjoylife

Kitty cat it doesnt matter what negetive you are its the Taxotore and its not every one but every week our group finds more people I will forward you a interview they did with a lady from FRance but its everywhere and I will give you the contacts to discuss this with in our group they can give you Taxol and it doesnt have permanent hair loose. Email me at bostonian3@yahoo.com and I will forward you this article and you can contact Pam Kirby who started this thread, before I wrote on this I thought I was the only one in the world like this I am not ...

Maura

enjoylife

Kittcat

 http://wwKw.dailymail.co.uk/health/index.html this is the link if anyone wants to read about perment hair loose Shirley is a unbelvable lady she is strong and has guts and I have never meet her. this will probaly hit the globes sooner than we think ...

Maura

anneoz

I read the article in the daily mail UK.

I am another women who received taxotere and after one year since stopping treatment my hair has not come back normally. It is so thin and sparse, especially on the top and crown of my head where I look like I'm balding.

Can you imagine what courage it took for the woman in the article, Shirley, to tell her story and post her photos.  

It is notable that the doctors interviewed for the article did not blame some genetic cause or some predisposition but lay the blame where it should be, TAXOTERE. He recommended looking more thoroughly at the side effects data from clinical trials of this drug. We can only hope

kittycat

Maura - thank you for sharing this information.  This woman is very brave to fight this and post pictures of herself.  I can't believe this! 

Anneoz - why did they give you chemo for DCIS? 

kittycat

I don't know if you all have posted this blog, but I found this, as well:

http://taxoterehairloss.blogspot.com

Anonymous

Ladies, I posted a very long post on the "Chemo" thread about the permanent damage done to me by Taxotere. I was a 57 year old vibrant and healthy woman whose entire life has been changed because of one chemo treatment with taxotere/cytoxin. I am now an invalid and I am four months out of my one and only chemo treatment. I am told that I had a "delayed allergic reaction to the Taxotere." It took several specialist oncologists from the top universities to finally diagnose me after chemo. I was and am not recovering from that one chemo. I had Stage II BC with no lymph node involvement-but it will not be the cancer that kills me-it will be the Taxotere. I have begun my own letter writing campaign with specific clinical data on my case. I was told my by former oncologist that I would have "chemo on Thursday and go to work on Monday" bec that is how well all of his patients DO on this chemo treatment. Well, they do NOT and he lied to me!! I know this has happened to him before with other patients bec once my treatment went south, he had a clear gameplan-that plan was to drop me like a hot rock and NOT TELL ME HE HAD DROPPED ME. He kept stringing me along with promises of all kinds. Since I have not had cancer before, I did not know better. I believed him. Within a week of chemo, my finger and toenails turned black and ulcerated; i lost all of my hair (still bald headed); my skin blistered from head to toe and began to 'sluff off of me"; I was blistered from inside my mouth down my esophagus; my GI tract has not recovered and I cannot tolerate real food (I am on a liquid diet); I had perfect teeth before Tax-now my gums become infected and my teeth are cracking and falling out due to taxotere; my eyesight is affected; i have been so ill I wished for death every single day until about a week ago. Last week, my PCP has decided to do a POST CHEMO assessment and he has found out that the damage done to my organs from Taxotere, is permanent! So far we have found out that my heart is damaged and I must take HBP meds bec my BP won't stabilize; my veins are shot and last ER trip, they could not do a CT with contrast bec they could not get a good vein; they could not get blood out of ANY vein nor put in an IV; I am told that my beins are destroyed because of chemo; my thyroid is permanently damaged and I have been trying to recover for four months with no thyroid function at all (unknown to me and my former onc did nothing to test any of my organ functions. My gues, he already knew about the damage done tome and preferred to keep me his dirty little secret. I am now on Thyroid meds; I am suffering from perniscious anemia and on iron supplements; my body is not producing Vit D and I am on 50000 units of Vit D a week; I am on B-12 shots; and I am on a number of GI meds to prevent GERD bec I have severe asthma. I am a retired medical clinician and I can say that I have never seen a drug such as Taxotere being used that is so incredibly devestating on the human body. I cannot believe that the FDA approved such a medication for human use. I understand now based on info I have gathered that Tax is a huge money maker for those people on the money end of chemotherapy treatment-the patient be damned!!! I will never be the same because of this drug. I am also suffering from mental and neurological deficits and peripheral neuropathy from this one chemo treatment. I am told my liver functions are so damaged that I will never be able to have radiation or any other chemo. All the doctors are offering me now is a double mastectomy!! I am told that I will not die of cancer, but that I will likely die of the damage done by the chemo before cancer the returns. I was a vibrant retired woman who owned her own art gallery and did work in wildlife photography and watercolors. I had everything from a clothing line to prints to framed art to greeting cards and was very successful. I have nothing now. I have lost everything within four months!  IF I HAD BEEN TOLD THE TRUTH ABOUT THIS MEDICATION, I NEVER IN A MILLION YEARS WOULD HAVE CHOSEN IT AS PART OF A CHEMOTHERAPY TREATMENT. YANK THIS DRUG OFF THE MARKET. There is no clinical evidence that it improves anyone's chances of riding one of cancer nor keeping cancer in remission, to my knowlege. The damage done by Taxotere to women is shameful and unconcionable!!! WE ARE THE GUINEE PIGS FOR THIS DRUG AND PEOPLE ARE MAKING A LOT OF MONEY OFF OF OUR MISERY AND COUNTING ON OUR DEATH. I cannot find an attorney who will take my case and I have looked for months. I think a class action lawsuit is appropriate and long overdue. Kudos to those of you who made it thru Taxotere treatment-I DID NOT AND I WILL NOT EVER BE THE WOMAN I WAS BEFORE CHEMO. Sorry to be so angry but this is the one time that women with BC must stand up for our right to live a quality life-cancer free-without further damage from so-called quack treatments like Taxotere. I have never been down on a medication like I am on this one and I am normally very level headed. I have a strong medical background and if any doc is telling you to DO Taxotere-think twice-research all that you can-do not allow someone to destroy your life like mine has been destroyed. I would never deny a woman the chance to beat cancer if I did not think this drug so dangerous. There are other options than Taxotere and why oncs are pushing it so hard-I truly have no idea-other than the money involved. Blessings and love to you all, SV

kittycat

Still verticle - so sorry to hear about this devastating effect Taxotere has had on your body.  You were stage 2 with no node involvement?  Why did your onco prescribe chemo and not a hormone treatment?

MaryNY

StillVerticle: What happened you is horrific. I've heard of people having immediate allergic reactions to chemo drugs. I suppose in those cases something can be done to counteract the effects before permanent damage is done, but with a delayed reaction it must be more difficult to treat in time. Is there any possibility that they gave you the wrong dose?

I love the flower photos you posted on other threads. Beautiful!

marcy4

STullVerticle

I don't know what to say. There are no words to express how I feel for you.  I had an allergic reaction to my chemo this morning taking the FEC.  It was stopped immediately and my treatment regime will be changed.  My biggest fear with any of these drugs is the side effects. Sometimes I think perhaps the surgery got it all and this is a lot of risk for nothing, but then am afraid to take that chance. I met with my oncologist last week and told him I would NOT take Taxotere under any circumstances. I wish you all the best.

shadow2356

To anyone whose doctor says they need taxotere, consider using the Penguin Cold Caps. I did and it saved my hair. It is very worth it. There is a whole thread on it under "Help me get through treatment" on this site.

hrf

StillVerticle, I am so sorry to learn what has happened to you. My symptoms are not as bad but I also have permanent effects. The chemo made me diabetic, I have permanent neuropathy in my feet and it seems that my hair, like annieoz, will never return. I cry every day because of all the losses. I thought it would be bad to lose my breasts but all this other stuff has just compounded the problems

mrsnjband

Hi Pam,

I'm still new here, but not new to bc. I was dx in 1-10-2008 ibc.  I too was given the less toxic "taxotere."  I was given 2 single dose and a final 1 1/2 dose in order to complete treatment before BLM.  I am sorry for your complete hair loss. My hair has been very slow to return and brows & lashes are still very sparce.  I had many other side effects that others have mentioned.  If I have a choice, I will never take taxotere again.  I still have motion sickness as a side effect.

 I see that you are from Oklahoma, I am from Oklahoma as well. I was wonder what part of Ok?  I am from the Tulsa area.  Hope you are doing well.

Love & prayers. NJ

kittycat

I saw an onco at Sloan today and mentioned the permanent hair loss thing with Taxotere.  She acted like I was crazy or something.  Well, needless to say she said I could do either  TC or ACT.  My new onco at home recommended ACT. Thanks everyone for telling me about Taxotere! 

marcy4

Kittycat

I was orginally to get Docetaxel and told my oncologist I would not take it, but would take Taxol.  He changed mine to Taxol for 12 weeks.  He said the weekly Taxol was as effective as 3 Docetaxels every 3 weeks.  I am still doing my AC part, so I can't tell you anything else about what Taxol is like, but I am hoping it won't be too bad.

enjoylife

Thank god we saved another one I will let the girls know on taxotears you are not nuts we are proof unfortunatly I think its not known every where my sisters hair dresser in boston never heard of it and told me to order a wig I dont want to wear a wig but might have to so I dont look so sick all the time

kittycat

I am supposed to be getting dose dense AC/T. 4 rounds of AC and 4 rounds of Taxol.