taxotere and permanent hair loss

okblessed

you - and commenters like you - are the reason i am deleting all my posts from this topic that i started in 2008.  this is not about being 'alive' it is about permanent hair loss and dealing with it.  our group has now grown to over 300 and there is an equally if not more effective version of the drug that does NOT cause permanent hairloss.  the problem is educating the public so that women can make a choice - or at least know that taking the drug that is most expensive and promoted by insurance groups is NOT always the best choice.

no one HAD TO HAVE PERMANENT HAIR LOSS - WE COULD HAVE SURVIVED EQUALLY AS WELL ON THE GENERIC VERSION OF THE DRUG BUT WE WERE NOT GIVEN THE CHOICE!

this was about research and education - we don't need to be chastised about how this has affected our lives.

jancie

okblessed - please do not delete this thread - in fact I think it needs to be bumped up weekly for the newbies. 

If it wasn't for you I would have been willing to take taxotere when Taxol was taking a toil on my body but it was this thread that made me insist to my oncologist that I would NOT for any reason take taxotere.

You have helped more women than you realize.  And because of you I pass on this information to every new member in the breast cancer support group that I attend every other week.

(((((( Hugs)))))))

jancie

OKblessed - I just saw that the OP was deleted.  I am sorry to see this.

Ang7

okblessed~

I am also one that you helped in making my chemo decisions...

I am sorry you deleted the OP.

sweetbean

Nancy, I don't think that was in reference to you.  OKblessed,  you helped me, too.  I think it is important to let women know about this potential side effect.  Permanent hair loss is totally unacceptable and 6-10% is WAY too high.

firebird

Just a quick note here to correct a misapprehension: Taxol is NOT the generic version of Taxotere. They are "sister drugs" because they are both taxanes. Taxol was the first taxane chemo drug and dates back to the 1950s I believe. Back in the day, they used to make it from actual yew tree clippings (the botanical name for yew is "Taxus", which is why the drugs made from it are called taxanes, and where the inspiration for the brand names Taxol and Taxotere came from). The chemical name for Taxol is paclitaxel.



Taxol's patent ran out years ago and it then went generic. Taxotere was developed later and its final patent only expired in late 2010. The chemical name for Taxotere is docetaxel. The fact that there was no generic Taxotere until the patents expired was the reason for the big price difference between Taxol and Taxotere until very recently.



Chemically there is no difference between the branded and the generic version of Taxotere. A patient will get the same SE from generic docetaxel (manufactured by Hospira) as she will get from branded Taxotere made by Sanofi-Aventis.



However similar they are, Taxol/paclitaxel and Taxotere/docetaxel are NOT the exact same drug. They do work the same way but they have different side effects and in differing intensities and far different rates of occurrence. AFAIK there is no statistical record of permanent hairloss from Taxol/paclitaxel but there definitely is with Taxotere/docetaxel. There are a number of other serious side effects that occur with Taxotere/docetaxel that are much rarer or virtually nonexistent on Taxol. That is why I refused to get Taxotere and would only agree to weekly paclitaxel (Taxol).



The big "practical difference" between these two different taxanes is dosage convenience: Taxotere/docetaxel cannot be administered weekly. It was specifically engineered to be a larger multi-week dose. On the other hand, Taxol/paclitaxel was designed to work on a lower, relatively constant-level weekly dosage; each dose pretty much washes out of the body completely by Day 10. Taxotere packs more of a SE punch in large part because of the way it was designed: bigger dose, longer lasting, resulting in more intense and more numerous side effects. For example, neutropenia is very common with Taxotere/docetaxol, it is not common on Taxol/paclitaxel.



The phrase "pick your poison" has never been more apt than when it is applied to the taxanes. I would amend that to read "Pick your poison CAREFULLY"!

ToniB

I too trusted my doctor completely.  From the first consultation she told me that my hair would grow back after chemo and never mentioned to me that there was a chance that it wouldn't.  I am now 19 months PFC of ACT and after telling her for months that my hair wasn't growing back  she finally admitted to me that it is likely permanent and that she knew there was a slight chance that this could happen but that the risk is so small she doesn't tell patients about it.  I cannot tell you how devastating it is.  I am angry at my oncologist for not telling me of this potential side effect as I would have refused the drug had I known as there are others that can be used. I had long, thick, full hair pre-chemo.  I know have about 25% of what I had. What hair I do have is thin and fine and won't grow more than about 3-4" and my scalp can be seen in many places.  I cannot tell you how devastating this is and what a negative impact this has had on my life. Not only do I feel unattractive and like a shadow of my former self, I can't get away from feeling like a breast cancer patient for even a day as it hits me every time I look in the  mirror.  I have seen doctors and hair replacement experts and they all tell me it is irreversible.  Has anybody had any luck regrowing hair in this situation?

Ang7

Oh Toni~

My heart goes out to you.  My neighbor uses something natural that is helping her hair somewhat.  I can ask her what it is called if you would like...

enjoylife

 Toni this thread was created by a lady named Pam and she is in our group its called taxotears please email me and I will send her and all the ladys your info there is a large group like me and you all over the US and Europe India and everywhere we are good support 3 years for me out and some over 5 and 8 years. bostonian3@yahoo.com

anneoz

ToniB

My hair also did not return as my oncologist said it would. It seems that the doctors are there when handing out treatment but when something goes wrong, you are on your own. One dermatologist told a woman in our taxotears group that as soon as she saw that her hair was not returning (maybe 6 months PFC) she should have started minoxidil to give it a "kick start".  So our oncologists not telling us that permanent hair loss could occur, we were not to know that early minoxidil treatment could have brought all our hair back before it was too late.

 Minoxidil may be the answer for you because it has worked for some women in our taxotears group. Like you I had about 25% of my hair. I went to a dermatologist who specializes in hair (and conducts research in hair stem cells) and he gave me ORAL minoxidil. I was to start on 2.5mg per day and after 3 months, my hair started to return and now I have about 75%. It's a long way from the thickness and texture that I used to have but my scalp doesn't show now. 

 I delayed starting this treatment (until 17 months PFC) because I may need to take it for the rest of my life but decided that it was either take it or stay almost bald for the rest of my life. I have had no side effects AT ALL other than a bit more downy hair on my jaw (which could be easily removed but I don't bother).  The advantage of oral minoxidil is that you don't have to rub anything onto your scalp every day and it affects all hair evenly.

Like you I suffered enormously from this devastating outcome. I was in a very dark place and didn't think I could or even if I wanted to get out from it. I very much hope that if you try minoxidil it will work for you.

Ang7

anneoz~

It makes me so angry that many oncologists don't even mention this fact.  I ended up asking mine about the 6% after I saw the information on BC.org.  She did agree with the percentage when I asked her about it but said none in her practice had that happen...yet.

I am very thankful for the ladies on this thread.

makingway

I hate to make you all more upset..., but in addition to your oncologists not telling you there is a possibility of permanent hairloss, there is also a way to save your hair when doing chemo. They are called Penguin cold caps. Over 90% of women that use them save their hair. I have also heard of wearing them between treatments to enourage hair growth. I'm not sure if that is valid statement-I haven't done the research on that aspect.

When are doctors going to be honest and upfront with their patients!!!

okblessed

Ladies - I am revisiting this site because I have been asked to speak at a breast cancer awareness event and I wanted to review some of the experiences of my past.

No one has offended me [except at the very first when the lady accused me of trying to get money to put my child through college - and I am over that].  I am just tired of trying to get the word out and after all these years I am still finding ladies receiving taxotere without knowing the possibilities of the permanent hairloss aspect.  I think that most of the ladies from the original group are weary of not being able to spread the word.  And, unfortunately, there are many new ladies from all over this planet to carry on.

Please feel free to contact me on my personal email:

kirbypk@yahoo.com

If I don't answer - reemail - it may have gone to spam and I missed in before deleting.

We have a strong group  - even though only a few of us have met - we are like family because no one else understands how we feel.

I need to learn how to set up a facebook account to carry this forward [if I can figure out how! LOL].

This month I celebrate my 5th year after diagnosis and in cancer terms that is a REASON TO CELEBRATE!

Best of everything to each of you.

We CAN do this.

Pamela Kirby

kirbypk@yahoo.com

McAlester OK USA

okblessed

Hello Jancie - I just responded to a post below. I do so hope that you are doing well.

As I said in that post - I am tired and sometimes the negativity of insensitive people is more than I can deal with for the day - especially in the summer when the temperature is 120 and I have to be in the public in a hot wig.

I do hope that some people have been educated and therefore have been able to make decisions based on well thought out choices.

Many, many blessings to you and your family.

I have many precious LDS friends in Utah.

Pamela Kirby

kirbypk@yahoo.com 

hrf

Anneoz, I am putting Minoxidil on my head and had no idea it could be taken orally. If I could get even 50% of my hair back, it would make a huge difference. I was also told that it could take 18 months to make a difference and the best it might do is to just keep what I have. Very discouraging. But I will ask about oral Minoxidil. Has anyone heard about using laser to stimulate hair growth? I've been reading about it but wonder if it's just a money grab. 

Nancy, where did you buy those products for your hair? 

okblessed

With all due respect, I realize that this is a public site and that I cannot edit the content of posters. However, since I did originate this topic, I do have the ability and the option to delete, leave, exit. whatever when it is offensive, degrading, or hurtful to those of us trying to cope with this disability. 

The women in our group have seen numerous dermatologists, oncologists, endocrinologists, rheumatologists, Dr. Paradi Mirmirani, Dr. Gary Rothfeld, Joseph W. De Haven, Endocrinology and Metabolism, the top researchers from Johns Hopkins Hospital, Baltimore; Massachusetts General Hospital, Boston; Mayo Clinic, Rochester, Minn.; Mount Sinai Medical Center, New York; University Clinic Heidelberg ; Assistance Publique Hôpitaux de Paris; Centre Hospitalier Universitaire de Toulouse; Universitätsklinikum Dusseldorf; Jeddah National Hospital, Saudi Arabia; Royal Brisbane and Women's Hospital - Brisbane, Queensland; we have also worked with researchers from University of Texas M.D. Anderson Cancer Center, Houston, TX; Memorial Sloan-Kettering Cancer Center New York, NY; the University of Oklahoma Medical Center; and Dana-Farber/Brigham and Women's Cancer Center, Boston, MA. To date, there is no resolution to this condition. No shampoo, conditioner, salve, potion, etc. has made any real difference.  Minoxidil is available for our condition but only has minimal success.

Our goals are [1] to learn to cope; and, [2] to educate others as to options for treatment to avoid the possibility of permanent hair loss.

3jaysmom

i haven't been here in a long time..(sorry) i've been SO sick.. and the jury is still out on the hair "thing" tests have shown my thyroid to be on the hypo side. that CAN explain some of the problems i've had with it...

 they were quick to tell me, it still may be permanent, bc of the taxotere. i DO understand what you're trying to say, okblessed. .. are you guys doing wigs, hats, or all of the above? its' a real emptional loss, after everything  else, to be sure.......just wondering how you guys DO cope.......3jays

anneoz

hrf

Minoxidil was originally formulated in pill form. It was used to treat high blood pressure and patients were generally prescribed a 10mg tablet daily. Doctors found that their patients who were getting this drug were not responding with lowered blood pressure. However, many of their patients reported increased amounts of hair. Generally the side effects listed in the drug information for this drug relate to the 10mg dose.

With the discovery that minoxidil was one of those rare products that could actually grow hair, many people (mainly men) wanted to use it . To be on the safe side and to make it available to many people, minoxidil was then formulated into a topical form and could be obtained without a prescription. It started out being provided as 2% strength but studies later found that the 5% strength gave much better results without much difference in side effects.

All I can say is that my doctor had no problem whatsoever in prescribing 2.5mg (I can only get 10mg tablets here, so I cut each pill into 4 pieces). The name of the pill form here is Loniten.  I have low blood pressure, so that could have been an issue but I have not had any problem at all (more evidence that this drug was useless in lowering blood pressure).

 When I started chemo, of course if I had known in advance about the risk of permanent hair loss I would have asked for another treatment (taxol ) or failing that I would have used cold caps. But that didn't happen and I ended up in the sorry situation of having only 25% of my hair return. If only my oncologist had told me about the risk of permanent hair loss I would have started minoxidil at say 7 or 8 months, way beyond the timeframe for the normal expected return of one's hair. I have since learned that early treatment with minoxidil may have returned all of my hair. And with treatment begun at an early stage, it seems that once the hair responds, you can taper off using it. (I still don't know when I can taper off using it now)

In the same way as the taxotears group seeks to warn other women of the potential for permanent hair loss after treatment with taxotere, I would like to tell women whose hair loss shows signs of persisting beyond the normal timeframe (I don't mean slow growth, I mean NO growth)  they should consider using minoxidil, either in pill or topical form.

  

mrsnjband

I too am sorry you deleted your original post but glad the thread is still here.  I only had 3.5 doses of Taxotere & it about killed me.  It made me sicker than all the other drugs I had.  They switched me from Taxol to Taxotere.  If I had known it could have caused premanent hair loss I would have refused it, I will never take it again. 

My hair did come back but it took a year to get to an 1 1/2 inches & very thin.  It is still thin but at least I can style it. I don't have anywhere near the amount of hair I had before.  I am just glad I have hair.

Also, my brows are very thin & light as well as my lashes.  I almost have no lashes on the bottom.  

ToniB

Has anybody tried acupuncture for the hair loss from taxotere?

irishbrae

I just want to share my story because if I help ONE person it is worth my time....

In 2008 i had bilateral mastectomy with recontsruction and also took taxotere followed by a year of herceptin... When my hair came out I was Brave and went bald...No wig for me......but as I waited for it to come back I was sorely dissapointed...it came back much slower and thinner than I expected...so thin that my eyebrows and pubic hair were like baby fuzz and the hair on my head was half what it was before....This continued for two years... I worried about styling in a way to hide it and was anxious about it...then i saw an episode of dr oz about prilosec and B-12 defficiancy..and an alarm went off in my head...during chemo I had acid reflux and started taking prilosec..My Doc said it was safe long term.... I quit taking it...started managing the symptoms with diet and exercise and taking a B-12 supplement...6 months later my hair is almost as thick as before chemo.. 

burley

I'm new to this group, but not to the boards. I'm 19 months post chemo (which included 4 treatments of Taxotere) and my hair has grown to only 4 inches. And it's very thin. I actually have a spot that the hair seems to be falling out again. I have a bald spot where a man usually gets one. My eyelashes continually fall out but luckily they grow back. My eyebrows are thin, but at least they're there. The weird thing is all my body hair came back with a vengeance.



I'm taking a Biotin supplement, as well as plenty if other vitamins. But I may head to the store tomorrow for B-12!



I feel like I look like a boy. I have a tendency to wear a baseball cap when I go out of the house. Luckily I work from home. I complain and whine about my hair all the time. It has seriously messed with my self esteem. No one around me understands how I feel. I see that you ladies do, though.

Anonymous

Bumping for crking71

Anonymous

bumping so that others will know that this is happening.

okblessed

IF YOU ARE EXPERIENCING WHAT YOU BELIEVE TO BE PERMANENT HAIRLOSS - PLEASE GO TO WWW.AHEADOFOURTIME.ORG

A WONDERFUL SUPPORT GROUP!

Sandy65

Hi ladies,

I am due to switch from taxol weekly tx's to taxotere because my mo thinks my side effects of taxol leg pain and neuropathy would be better on taxotere. She never mentioned the possible permanent hair loss se to me either, I just happened to run across it. You ladies have made me rethink my options. Now, I am really nervous about switching. Did I read that 6-10% of women on taxotere lose their hair permanently? Or did I read the posts incorrectly. Any advice would help as I only have a few days till I am supposed to switch.

take care,

Sandy

jancie

Sandy - my oncologist wanted me to switch also due to the amount of joint pain I was experiencing.  I had come across this thread luckily and told him that Taxotere was not an option and my reasons behind it.  He kept me on Taxol.  You do have a choice!  Just express how you feel but don't let him think this is just "a minute amount of women" - this is something that has affected many women.  I have spread this information out to everyone I know who is going through treatment.  Too many women got blindsided by the side effect.

Sandy65

jancie,

Thank you for your response. Something is just telling me not to do the taxotere. Call it an instinct or something but I don't feel good about it. How did you fair with the rest of your taxol tx's?

jancie

I never dealt with neuropathy but I think that was because I was on gabapentin for shingles at the time.

Yes, I whined like crazy because of the joint pain but I can't really remember experiencing any other side effects other than weight gain due to the steriods.

I went from Tamoxifen to Arimidex because I didn't like the SE's of tamoxifen but ended up switching back because Arimidex was worst for me.  I think you just have to listen to your body at times.  You know best how your body functions.

I also believe it is better to deal with SE's that are temporary versus hair loss that could become permanent.  

Hang in there - I know chemo is really hard to deal with but we all get through it and life is much better at the end.

Sandy65

Janice,

Thank you for sharing your experience and your input. I appreciate it. My mo is most concerned with the neuropathy. I have till tomorrow afternoon to make up my mind. Thanks for your support.

Take care,

Sandy