taxotere and permanent hair loss

okblessed

taxotere and permanent hair loss

okblessed

Ladies - I started this post in 2007 and remain permanently bald after having been treated with TAXOTERE.  I am grateful to be alive, I am grateful for every moment. Unfortunately, the number of women who contact me is growing. Although there are equal or better choices for treatment, women are still receiving TAXOTERE and are not being told about this devastating side effect. Our group has written to the manufacturer of TAXOTERE in the US, Canada and UK; the FDA has reports on file; we have notified researchers, oncologists, newspapers, and breast cancer information groups. I am so sad that we have been unable to prevent this happening to so many other women.

Please contact me through my email, kirbypk@yahoo.com or join us at www.aheadofourtime.org

REMEMBER TO GET AN ANNUAL MAMMOGRAM.

BLESSINGS.

suzy611

I WILL LIVE WITHOUT MY HAIR. I`M STILL GREATFUL FOR TAXOL I`M A TRIPLE NEG.,AND MAY NOT BE HERE IF IT WASN`T FOR THE TAXOL.

RIV54

Many of us here have suffered from temporary and/or permanent side effects from our cancer treatments. I, personally feel that your comment is inappropriate for this forum. I doubt that there is anyone here who wasn't willing to do whatever was necessary to save their life. I doubt also that they were purposely misled or misinformed by their doctors. If I'm wrong somebody please tell me and I'll stand corrected.

Do you have a lawyer friend who needs something to do or a child needing college tuition?

okblessed

I am sorry that you feel it is inappropriate but I think everyone has the right to know the true facts.  I am not trying to get money from the drug company but do think they have the responsibility to tell us the truth.

I am also extremely grateful to be alive but I believe we should be told the truth about the side effects so that we can make educated decisions about the drugs we take. There were precautions that we could have taken if we still chose to use taxotere to possibly eliminate some of the permanent hairloss issues.  Research shows that since 2001 they have known that it can cause permanent hairloss. I was NEVER told this was a possibility - the manufacturer says it is temporary and this is 2008.

okblessed

There are some differences in side effects of taxol and taxotere although both are from the same family of drugs. I was not given the option of drugs but with taxotere I experienced the 'uncommon' side effects: [mine was complete] nail loss, [extreme scarring] burn-like skin rash on hands and arms, [permanent] hair loss.  My doctor did not know that I would experience the extreme reactions because they were not reported by the manufacturer.

sheshe48

I thought I would jump in, I understand your upset that you may have lost your hair permantly. I also did not know hair loss could be permanent. I was on AC and my new oncologist changed my treatment to TC. He said the adrimycin damages the heart. I was grateful he changed my treatment to Taxotere. I guess if I have to lose something I'd rather lose my hair. It is better to be alive and have a healthy heart. I won't lie I miss my hair too. Good Luck to you OkBlessed.

chemo072

okblessed - that's terrible!  Did you make it all the way through taxotere treatment?  I hadn't heard of the permanent hair loss happening...I'm so sorry it happened to you.  When I took taxol I had the feet-peeling thing, I forget what it's called, and my doc and I discussed reducing dosage....in the end we didn't, but now with liver lfts that aren't yet normal I wonder if I shouldn't have gone for the lower dosage....but who knows.

I know I read the rxlist very detailed description for taxol and don't recall anything about permanent hair loss - if that isn't there for taxotere, it sounds like it might be time for it to get in there. 

Folks who are anti-lawsuits - sometimes it's not just about the injury, it's also about making sure that it doesn't happen to someone else, and making sure people have adequate warning.  Kind of a public service.  If women who had a choice of which chemo drug to take knew that in .005 % (for example, random guess) of cases for chemo drug xx there might be permanent hair loss, would it change their mind about accepting that risk?  Maybe, but maybe not.

For example, previous to getting cancer I was enrolled in a fibromyalgia drug trial with a growth hormone secretagogue - that, despite having an intense family history of cancer.  I shouldn't have been allowed in the trial, but I was too naive to know that.  Turns out that the growth hormone secretagogue may well have helped the tumor to grow really fast (one year it didn't show up at all on a mammogram, the next year it was 2 cm + scattershot DCIS), despite the fact that it was a low-grade tumor..... Who knows what causes cancer but I may well go after the pharmaceutical company just so that other women with family histories like mine get adequately warned and screened out from taking drugs they shouldn't take.

okblessed, sending hugs and support your way,

okblessed

I just reread your comment about a lawyer or my child needing college tuition. No, I am a single mother and I worked and put my son through college by myself. I raised him without child support or government aid.  I went through most of this alone because my parents died when I was young and my son was away at college.  I worked all but 4 weeks and only missed then because I got a staph infection from the hospital that required a second surgery.  I made each decision about my treatment alone and don't want someone else to go through what I did without at least having clear, true information about the drugs being used.

okblessed

Thank you for understanding that it is not about getting money from a drug company [although some wig money might help!]. Many times drug companies are not truthful until they are forced to be. While going through treatment we don't always think about anything past living through the day. I just wish I had had the option to use a cold cap or some of the pressure caps to help with the scalp area. I live where it is often very warm and extremely windy. My wig actually blew off in a walmart parking lot and I went straight home and didin't come out for 3 days. I know that is silly to some but trying to rebuild your life as a single 'bald' woman is emotionally difficult. Not discounting any of the difficulties that each of you have gone through.

And about the lawyer comment from the other lady - yes, I divorced a lawyer and that is why I raised my son alone and without child support. My lawyer husband did not want children and I refused to have an abortion.  I have a great son and am proud of him.

Thanks AmyaM for understanding that sometimes we have to do what we can to protect others.

Blessings to each of you.

okblessed

Thank you sheshe  -  yes I am so blessed to have only lost my hair instead of my life or damage to another major organ. I have walked several of my friends through breast cancer in the past few months and each already has more hair than I already.  I am sure that in the scheme of things this hair-thing is just a small little nothing.  I appreciate the love and support that each of you are sharing - and I hope that I can do the same for others. I have learned not to take even the smallest things for granted and I cherish each day that I have to live.  Bless you and may you continue to walk in 'God's perfect health'!

RIV54

I didn't mean your child, I meant the lawyer. Sorry if you mis- understood the question.

okblessed

AmyaM - I had forgotten about the feet peeling thing - yes, I would walk across the carpet and large pieces of skin would fall off and leave a trail behind me --- I think I left the vacuum out most of the time because I was always trying to clean up the mess. My hands did a similar thing but they did therapy in the burn center of the hospital which was helpful but there is a lot of scarring.  My doctor lowered the dosage twice. I can be thankful despite the side effects that it surely killed all the cancer!

okblessed

response to RIV54

I have a number of lawyer friends but none that specialize in class action medical or pharmaceutical suits.  Latest research shows , according to my oncologist, that 4-5% of women receiving taxotere are experiencing permanent hairloss.  This is a significant number of women.  My question is what other side effects may be caused by this drug that are also not indicated.  Without class action procedures the FDA may never be alerted to the possibilities that an investigation into side effects is indicated for this drug.

CalGal

OkBlessed -

I think you're on to something re:  permanent hair-loss!  There should be full-disclosure of all possible side effects and the patient can choose or try to take preventative measures.

As a trip neg with mets, chemo and/or biologic agents are my only options.

My hair (in all areas) did not come back to pre-Taxotere & Carboplatin quantities!  (I also did dose dense AC first). 

- 5 mos post-chemo and I had 10 eyelashes total!

- Now, almost 16 mos post-chemo, my eyebrows are very faint;

- Underarm hair was always light, but now it's almost non-existent;

- "Private" hair fared somewhat better, thankfully ...

Hair on my head -

I used frozen gel caps to save my post-AC hair!   I took a break between chemo combo's for RFA of my liver mets and had very short hair ... and didn't want to go back to being bald!   Initially, I didn't "wrap" the caps as instructed so that they would be tight in the "sideburn area".  In that area, I lost my hair and it came back much more sparse.

I also used the frozen gel gloves and booties to minimize my changes of neuropothy and nail-lifting.  That worked for me!

My eyelashes did not return UNTIL I started using Lumigan (prescription only) applying it in an eyeliner manner.  The directed use is as a glaucoma drop, with the (in my case beneficial) side effect of eyelash growth when it is spilled on the skin!   For once, a "good" side effect.

CalGal 

MaryAnn-CA

Does anyone know if this permanent hair loss SE is only from Taxotere ... not Taxol?  Thanks!

okblessed

I have only heard of it from taxotere and it was really difficult to get that information which is why I asked the question on this forum.  The UK seems to have a lot more information regarding permanent hairloss than here in the US.

MaryAnn-CA

okblessed ... do you have any specific website references that you could give us?  Thanks!

dhettish

I am a triple negative and I had 4AC and 4 Taxotere. I was told Taxotere would be soooo easy. It was not! I had

Severe Edema in my upper torso, arms, neck and face.

Severe Breathlessness (I could not carry on a conversation, walk across a room)

Sever Muscle Aches, Severe Joint Pains

Severe Muscle fatigue mostly in my thighs but a taking a shower would have my arms feeling like I'd been lifting weights.

Peeling feet (plantar syndrome)

Complete Loss of Taste

Tongue Sores

Yellow nails with white marks (thank god, I did not loose them)

Abdominal Bloating

Weight gain of 20 lbs in 6 weeks.

I don't think Taxotere is the problem. I am hoping the drug saved my life. The problem is the docs not telling me or telling me that is not a SE. Yes it is....I looked it up! I don't think they are properly informed on all the SE. I had to postpone my last tx a week. I was begging for my last dose of taxotere. Better, fat, bloated and bald than dead.

I have not heard of permanant hair loss. Mine is coming back like light fuzz but there is nothing on the top of my head. I am only 11 days from my last tx so I'll hang in there. Just worry with all the SE I got, if I don't get this as well. But I am going to think positive.

Sheshe48, there is a drug called Zenicard you can take to protect your heart from Adriamycin. My doc gave it to me as I went over the lifetime max of A  because I had it 21 years ago. My last MUGA was good.

Debbie 

Kindergarten

Wow, I had four treatments of taxotere. I had headaches and temporay hair loss, but I have more hair now than I did before. I think it might be an unusual and uncommon side effect. Taxotere saved my life and it also gave me a beautiful complexion. Just thought I would chime in. Kathy

MaryAnn-CA

Kathy thanks for your input.  Very encouraging!

okblessed

Hello everyone and Happy Easter! I am so blessed to be celebrating this time of the year.  Yes, I gained weight and had extreme se but have forgotten most of them - the only lingering one is the hairloss.  When I get back to my office next week I will try and list some of the research sites.  My doctor has some that he might share [open to physicians only].  I go back first week in April to see if spot on my lung is scar tissue from radiation[what I am believing!].

I really appreciate the encouragement from everyone - even though my se were extreme - I am through most of them. Hopefully we will be able to comfort others who experience the same difficulties. Most of it is like having a rough time in labor --- a couple of months after holding your baby, youhave completely forgotten those labor pains:)

Here is to a new day filled with wonder and a new appreciation for all  the things in our lives!

MaryAnn-CA

okblessed - thanks for posting again and offering to list some of the research sites you found.  I'm glad you are past the worst of the SE's and wish you all the best at your appt in April.  Let us know how you are doing.

okblessed

Hi Pam - I am  'Pam' too.  I have started using Nioxin to shampoo my 'head' with and I use vitamin e on my eyebrow and eyelash area.  I use a large massager on my head each evening to improve circulation. The dermatologist has me on minoxidil [generic rogaine] --- I have baby fuzz over most of my head - top still sparse.  Problem is that fuzz causes wig to slip so I have a 'hair' cut every month or so.

My eyelashes are coming in and I actually have more eyebrows than I can count now!  Praise GOD!

There is hope but I believe it is through prayer and belief in God that my hair will return!

okblessed

I keep a champagne glass on my nightstand with the [not synthetic] 'e' gel caps in it. I puncture one and use it on and around my eyes every night.  It does great to keep wrinkles away and seems to be helping the hair grow.  I close my eyes, warm the gel cap in my hand then dot it on.  I take 'liquid' [not synthetic] 'e' oil from a little bottle and massage into my scalp.

I am not sure if the minoxidil or nioxin work  BUT since I have been using the 'e' and the nightly massage I am getting fuzzy hair filling in.  My doctor asked me if I was getting 'nose' hair --- an indicator that 'head' hair will return.

MaryAnn-CA

Hi pam2622 - I am following this conversation with interest as I am currently taking taxotere and wondering how I will do in the hair regrowth department after my treatments are over (April 24 will be the last one!).  I have read about the Nioxin before but not the Vitamin E. I guess anything that stimulates the hair follicles is good.  You mentioned that you have been using Nioxin for 10 years - were you using it even before you lost your hair due to taxotere?

okblessed

Hi MaryAnn - I am the other Pam and have only used it this past year.  I had 'extreme' reactions to taxotere and even lost all my nails [keep yours trimmed very short].  You may not have nearly the reactions that I did.  My doctor had to cut my dosage way back after the first treatment. I would certainly ask about the cool cap, my friends in the UK have had much better luck preventing overall hairloss by using that method.  And again, the dermatologist recommends minoxidil [generic from Wal-Mart].

I had very thick, strong hair before treatment so this 'fuzzy' stuff that does not cover my head is strage for me - actually it is my only reminder.

My only issue is that we should have been warned about the possibilities of permanent hairloss by the manufacturer.

okblessed

Hi!  Maybe it is just us 'Pams' that have the hair problem! I sure appreciate hearing from everyone - now I don't feel so alone.

Anyone have unique ways to cover their heads? Oklahoma gets to be about 120 in the summer and I am not looking forward to a wig.

Ideas? suggestions? scarf tying classes? cute hats?

okblessed

Hi!  Maybe it is just us 'Pams' that have the hair problem! I sure appreciate hearing from everyone - now I don't feel so alone.

Anyone have unique ways to cover their heads? Oklahoma gets to be about 120 in the summer and I am not looking forward to a wig.

Ideas? suggestions? scarf tying classes? cute hats?

okblessed

Lets!

Ooops - one of my 'Pam' friends just reminded me that she already has hair [she was diagnosed almost 10 months after me]. Okay, it has to be something else - perhaps it is because I have to have a Sonic Vanilla Coke each morning to start my day.

Thanks everyone for sharing humor - I couldn't do this without being able to laugh at myself:)

okblessed

I thought there would be more people also - but at least the few of us with the issue have found each other.

If you have ideas on how to get more involvement just let me know.  I think I started this the evening after I went to Wal-Mart and my wig blew off in the parking lot - I just climbed back in my SUV and went home - hid under the covers and watched old movies for 3 days!