Permanent Hair Loss-Taxol or Taxotere

posij3

I posted this in Feb 2017; please give me updates from anyone who's had this experience of side effects

Feb 26, 2017 04:56PMGood afternoon; I am looking for information from other members of the BC community. My history is below DCIS that was undiagnosed. Became IDC, Stage 1, grade 3 tumor, no lymph node involvement, triple negative breast cancer, diagnosis 2/2007, lumpectomy, chemo (4 rounds of A/C, 4 rounds of Taxol), 45 treatments radiation, finished treatment 10/2007. I am reaching out due to permanent Hair Loss from Chemo. The recent lawsuits against Taxotere (doclitaxel) do not include patients who received Taxol (paclitaxel) though my understanding is Taxotere was created due to Taxol being scarce and having a monopoly on the market. Sanofi-Aventis, manufacturer of Taxotere, developed the product in 1986 and approved for use in 1995.

Taxol was approved for medical use two years prior in 1993. It is in the Taxane family of medications like Taxotere. The package insert from BMS in 2007 didn't indicate it's use for early stage BC treatment. When I asked my oncologist about this, he said due to my triple negative diagnosis, he wanted to be aggressive. He never mentioned that permanent hair loss was a possibility. I was 42 years old at the time of diagnosis, early stage, no lymph node involvement. If they had told me permanent hair loss would have been a possibility, I would not have done chemo. I would have had my lumpectomy, proceeded to radiation and been done. Can you please tell me if there is a community board to reach out to others to see if they've been similarly affected by Paclitaxel/Taxol? Thank you; breast cancer.org was a tremendous help and support during my BC and I pass it on to folks who are going through diagnosis and treatment.Charlotte

Fukcancer

Hi,

I'm a little unclear about what you're asking. Did you get permanent hair loss from Taxol? I have not seen anything about that on the internet. I have only come across posts and talked to people who had permanent hair loss from Taxotere. The brave stories from those who suffered from the devastating side effect of permanent hair loss made me request thatmy oncologist to give me CMF, not the recommendation TC (Taxotere Cytoxan). Several oncologists that I consulted with didn't even disclose the risk of permanent hair loss with Taxotere.

If you had permanent hair loss from Taxol, I encourage you to spread the word to everyone you can. You might save others from suffering from this heartbreaking side effect.

Scrafgal

I am bald...either taxol or FAC jammed my immune system to cause alopecia areata.

posij3

Fukcancer,

I posted this because I'm trying to find out who has had permanent hair loss from Taxol. Taxotere was found to cause permanent hair loss and Sanofi-Aventis had evidence of it. They didn't share that and only when BC survivors started comparing notes on I believe this website, did it even come to light. They became known as "Taxoterrorists" because they started spreading the word. However, I still hear of women who haven't been made aware of hair loss with Taxotere.

What I'm hopeful to find out is whether or not a similar issue exists with Taxol. I believe it does and don't think I'm the only one it's happened to--as evidenced by "Scrafgal" who responded today to my request for information. She's had hair loss as well from either Taxol or FAC. Our two instances of hair loss may be anecdotal but I doubt it. The composition of Taxol and Taxotere is too close that I believe there is a similar side effect. It would be one thing if they made us aware and then we could have made our choice. I certainly share my story with anyone who has received BC dx but encourage everyone to do so-so that they make the most informed decision.

Similarly, the researcher who came up with Herceptin supposedly did a landmark study regarding the inefficacy of Anthramyacide class of drugs for early stage BC (8% efficacy). This would be the Adriamyacin in the AC chemo treatment. I did 4 rounds in 2007 and it supposedly was the standard of care for 20 years until his study at ASCO June 2007. AC is still being given as a treatment and they aren't telling women about the efficacy results from his study. Very frustrating as there can be heart issues, exacerbation of bone loss, etc. Not trying to scare everyone but due diligence by doctors, their staff and the drug companies to be required. They are altering lives and it's important. Sorry to get on a soap box but it really is so important to make informed decisions since chemo can be very hard on your body.

posij3

Scrafgal,

If and when you have a moment, can we discuss by phone. Am compiling information on this as I believe Taxol has same side effect of permanent hair loss as Taxotere.

Thanks for sharing as it's the only way we'll know if this is a more widespread problem.

Scrafgal

posij3

Yes...just PM me...

I have often thought about the Taxol link to Taxotere but I've been so distressed while dealing with this,and returning to work, that I took no action on it. It's been really hard...mostly because I didn't expect it.

Scrafgal

bumping...

posij3

wasn't sure what you meant by bumping?

Beesie

"Bumping" is posting on a discussion thread in order to raise the thread back up to the top of the 'active' list, so that more people are likely to see it.

Libber

I began losing hair again about 6 weeks ago. Very distressing. Blaming taxol or switch from Arimidex to Tamoxifen. Not sure. I am bringing out my wigs to wear again. It has been 3 yrs since chemo. If others are losing hair yrs after treatment would love to know how you dealt with it

Meow13

My neighbor says her hair loss which appears to be permanent was caused by Arimidex. I took anastrozole the generic I didn't have hair loss but I had other symptoms that never went completely away.

Libber

Mine thinned while on a generic arimidex. But the major fallout happened after I switched to tamoxifen. I switched to tamoxifen to attempt to cut back on SE’s Bone Pain and nausea. Those have stopped mostly. But paying the price now with hair. I just started working part time. From a home office. Eventually I will have to show myself at business meetings. Not feeling good about that