Taxotere and permanent hair kiss

Or maybe check out cold caps. Taxol I believe is a substitute for taxotere. My oncologist didn't warn me of any permanent side effects either.

Taxol is not exactly a substitute for Taxotere as it is a smaller dose, but can be substituted in cases of allergic reaction, as can Abraxane. There are lawsuits associated with the permanent hair loss but they do not stem from the hair loss itself, but rather from the lack of warning on the package label. The labeling was put on a number of years ago so anyone treated after that point in time has no basis for the class action suit. None of those suits have been settled as of yet.

I was warned -- I signed the form that I had been warned. Luckily my hair is coming back fine.

I'm not surprised that you weren't told about that particular risk. When I first met with my MO last January before starting chemo, he told me that I'd be getting Taxotere (docetaxel) and I told him that I didn't want that because of the risk of permanent hair loss, since where I live, cold caps aren't permitted (they're safe and approved for use, but the Cancer Agency here doesn't permit them in their facilities). He became very agitated with me for disagreeing with him, he refused to discuss the risks involved or even admit that permanent hair loss could occur (so I would never have known if I hadn't researched for myself), but I was adamant and insisted on a different regimen (he was never going to offer a different option otherwise). You have to look out for yourself. Don't hesitate to speak up if something is bothering you, you're allowed to question your doctors, even when they don't like it. You need to know what they're planning for you and you need to be comfortable with it, you're the one going through it, not them.

I ended up on AC-T (Taxol) instead and was told by another oncologist that it is a very effective treatment, so I feel like I made the best decision for me. If you're concerned about your treatment plan, ask what are other options available instead. It's your life, your health, your body, your treatment, make sure you're comfortable with the decisions being made.

(Foe the record, I did lose all my hair, but it's growing back now, and just as thick as before.)

I started with taxotere and due to an allergic reaction, switched to abraxane (which is same drug group and same side effects). I did ask about permanent hair loss and they have never seen it in this practice (it is a huge cancer center in NJ). It was also mentioned that they only saw one patient who was successful with the cold cap, and most people gave up after two treatments. There definitely is a risk of hair not growing back, a very scary thought, but getting rid of this cancer is my priority.

Be well all!

Hello Flower. I am also in NJ and use a large group in central NJ. I will start Abraxane tomorrow. I have already purchased a wig and dread being hairless again. I wanted to get my hair cut short today but the weather is not cooperating. Best of luck to you

Hi!

Lunalin….Good luck tomorrow!!  You mention a wig-I bought one before my first treatment and I haven't worn it yet. I am more comfortable with my little beanie hats, which I can get away with in the winter. By the way, I am also in central NJ. Let us know how you do tomorrow!

Runrcrb-so wonderful that you have a full head of hair!!!!! Do you mind me asking, did your hair come back the same color?

Be well everyone!!

Pingpong

That is my experience too. It's seems impossible to find someone who can confirm their hair has grown back completely after finishing Letrozole.

Hello I am very frustrated I had my last chemo in 2012. My hair is horrible I have total hair loss it never grew back and I have been wearing a wig ever since 2011 my first chemo. I am in my high forties. This is very difficult for me. My oncologist says oh you look good. He never saw me without the wig I told him but it’s a wig. Anyway if anyone has any advice please I would appreciate it if you share. Good luck to all the people.

Re: hair loss - I am cold capping with the Paxman system during my Taxotere chemo treatments x4 every 3 weeks. This likely will not prevent enough hair loss to look ok, so I plan to shave my head when it looks bad enough. The reason I'm doing it is to do everything I can to prevent PERMANENT hair loss. Same with icing (cryotherapy) my feet and hands. There is statistical evidence cryotherapy helps decease the chances of permanent peripheral neuropathy (CIPN-Chemo Induced Peripheral Neuropathy) and hair loss. My experience with my MO and her nursing/PA staff is that they pull out numbers to say how unlikely these SEs are, but do not provide evidence. Honestly, I think it's anecdotal/what they've seen in clinic vs. real studies done. Ask for the evidence to back up their assertions. A nurse told me only 1% get permanent hair loss and my MO said 30-40% get peripheral neuropathy. I have to clarify her % to know if that's temporary or permanent. Big deal for me. I get more info from this site as far as SEs. There is a confounding LACK of studies about long term, permanent SEs from chemo. "Chemo brain"/cognitive decline, CIPN, blood cancers like leukemia and permanent hair loss are the main ones. I'm a nurse and question the lack of these studies. Without evidence-based studies, there is no treatment or solution. After chemotherapy is completed, statistical tracking seems to be focused largely on cancer recurrence, leaving out quality of life issues re: chronic SEs of chemo.

I plan to do all I can to prevent these! Can't blame me for trying!

Absolutely ice your fingers and toes going forward. I still have peripheral neuropathy 4 years later even with the icing. It isn't painful though. Mainly pins and needles and some numbness. It waxes and wanes. I also had permanent hair loss with Taxotere with my eyebrows and some eyelashes. My head hair grew back okay but is now thinning again due to Femara.

Nobody said a word to me about permanent hair loss. I would have still proceeded anyway but it would have been nice to have been told.

I have permanent hair loss, neuropathy and chemo brain 8 years after Taxotere! I wish I would have been warned of these beforehand so I could have made an informed decision regarding my treatment. It's been really really really tough.