Docetaxel - 37.8% permanent chemo induced alopecia

The research has thrown me into a spin. I'm due to start docetaxal next week but the thought of having a 37% chance of permanent hair loss has frightened me. I'm willing to endure chemo to reduce the chance of recurrence but not at any cost. I read the experiences of ladies who haven't had any issues with regrowth and that lessens my anxiety somewhat, but I veer between hope and despair the more research I do. My oncology team are not keen on cold capping so I don't have that option. 

Hi Andypandy, I wouldn’t be alarmed by the ‘research’. It does not say there is a 37.5% you will lose your hair….16% said they had a form of hair loss - so it’s 37.5% of 16% which is 5%. I also wouldn’t worry about it as it’s not particularly reliable:

- it is only circa 300 - very small group

- its just a survey and doesn’t do anything to explore how much was attributable to the AIs or hormone suppressants 

permanent alopecia is a potential (rare*) side effect for both taxanes (Paclitaxel or Docetaxel) but against the benefit of improved survival rates - (I think) it’s a risk worth taking. Talk to your oncology team and I’m sure they will give you some assurance on this.

*note that the Cancer Research website states it’s rare.

hope that helps

big hugs xxxx

Hello, Firstly, cold capping throughout your entire chemo course absolutely crucial - you will lose your hair, but the cold capping is to protect your hair follicles in your scalp. 

The worse permanent hair loss cases seem to be in the post-menopausal age group (I'm 58, hence I was concerned).

There are 10,500+ women in the US in a lawsuit for losing their hair permanently to Docetaxel.

I had in depth conversations with my senior chemo sister, she was liaising with my prescribing oncologist as he's sadly away on compassionate leave, but he so kindly emailed her re my concerns. She told me that I was given the 'gold standard' for chemo for my cancer type (Docetaxel, Carboplatin, Phesgo (Herceptin), still, I'm not willing to take that risk on Docetaxel. Paclitaxel is an alternative in the same drug type, albeit not so potent.

This morning she called me to say they will allow me to change to Paclitaxel on my next cycle. Of course, permanent hair loss is still a risk, but Paclitaxel appears to carry less risk in the data and research, but cold cap must be used throughout. I've heard that Paxman, the cold cap manufacturer, have specific instructions about scalp cooling, esp related to Docetaxel.

I found out about this and have learned so much from Shirley Ledlie and Carol Davies, both lost all their hair permanently on Docetaxel and campaigning for awareness. Shirley has a download on her website: https://www.saledlie.com/   If you use Twitter/X, they are there as @ShirleyALedlie and @CarolDa87459927. You can also look up Andrew John, UK Training Specialist for Paxman Scalp Cooling @AJPSCUK or coldcap.com

Ultimately, we're the ones carrying the risk. It's not one I want to take if there's an option with lesser known risk, hence I'm swapping to Paclitaxel. Losing my breast is bad enough, but hopefully it'll take the cancer with it too. If I permanently lost my hair, it would severely impact my mental health, confidence and be a permanent reminder that I had cancer. 

I've had a very stressful week asking for this. Firstly, I had to leave a message on my chemo ward line that I wanted to speak to my prescribing oncologist, then had a callback from a nurse with zero patient communication skills trying to steamroller me by saying 'you won't lose your hair/don't google/there is no other drug'. She went quiet after I said 'Paclitaxel'. I had to be absolutely insistent that my message was intended for the oncologist's response, not hers and that I'd asked her to relay my message in an email to him. She then agreed to do that, but it was stressful, as if we're not going through enough stress having a cancer diagnosis, then undergoing chemo.

Stand your ground and ask for what you want.

On another point, When you're on chemo they'll give you anti-sickness tablets. On my first round they gave me Ondansetron, one on the day, then take daily at home for 3 or so days after. This drug gave me horrendous constipation - ruined days in huge discomfort. On the second round they swapped it to Akynzeo - a one tablet anti-sickness drug that lasts five days - This was soooo much better! I also used Laxido drink sachets alongside Akynzeo to prevent constipation (they didn't give me these first time round) - it helped enormously, so I'd definitely ask for both these options.

Best of luck with it all

Debbie

Debbie ( and SKC8) thank you for replying. I contacted my wonderful oncology nurse about the research because the quality varies so widely and the terminology is so highly technical that it makes my eyes glaze over. (I recently retired from nursing but oncology research is a heavy read). She said the odds were 1 in 5 that hair loss could be permanent. Those are odds I'm not prepared to take and they certainly weren't mentioned at my appointment 2 days ago. She spoke with my oncologist and I'm having paclitaxel instead. Thank you Dkbythesea  I don't believe I came across your post by accident and it has helped me challenge a decision re treatment that I otherwise wouldn't have known about. Love and best wishes to you all.

Hi Andypandy, if you want to cold cap you can do it. It’s not a case of whether your oncology team are keen or not keen. They have to respect what you decide. As for permanent hair loss as SKC8 says it is a very small percentage in fact and only a very small study. I had EC which is notorious for loosing hair and this was followed by docetaxel. I did loose about 80% of my hair but it has now grown back thicker and curly than before. I cold capped throughout my 8 cycles of chemo. My hair started to grow back on docetaxel. 
I wish you all the best with whatever you decide is right for you. 
Hugs from cuffcake x x x x x

Yes, in the paperwork given to me on the consent appointment it says ‘occasional’ permanent hair loss on Docetaxel. I hadn’t given it much thought until I fortuitously saw a post by Carol and Shirley (even though I wasn’t looking at this topic), it was only when I noticed I’m on the same drug, and I’d be having my third chemo round this week that I read up. Ultimately, we have to trust our own instincts if we have stumbled across information and awareness. Like you, I don’t believe I saw their posts by accident. Whatever happens to me is now a decision I made with the information I had to hand. 
Please ensure you wear a cold cap for all your treatment. I didn’t find it at all bad. I found a Paxman video on YouTube about preparing for it… the best advice was to have some soft cotton or similar to cover your ears and skin of your forehead… they really feel the cold as bare skin. By lucky chance I’d just bought some soft reusable/washable make up removing pads (like fine soft towelling circles), they were a perfect fit over my ears and I used 3 across my forehead. I had no problem wearing the cold cap at all (the nurses say others can’t tolerate it at all (maybe they didn’t cover the ears/forehead). You have to wear it for some time before and after the chemo’s been administered. I’ve lost half my hair, mostly evenly, but I have got a chunk of bald area from crown to ear (started coming out immediately after 2nd chemo).

Good luck with your first round.

xx

Thank you. My mind is more settled now that the drug combo has been changed. The oncologist was fine with it - I was half expecting to receive a lecture on the benefits of docetaxel overall, but was equally determined make sure I was heard. We experience such loss of autonomy and control with this disease, I'm surprised more of us aren't ready for a heavily padded room and a hefty dose of happy pills.... but maybe that's just me, lol!

I had docetaxel 13 years ago and lost my hair permanently. Pre menopausal aged 38 at the time. I knew early after finishing chemo there was an issue with growth. Never told there might be a possibility of permanent loss. Took a long time to eventually be referred to a dermatologist but nothing could be done. Wrote me a prescription for wigs! I eventually found a real hair wig that I could wear full time (removed weekly to clean etc) but it’s cost me a fortune over the years. Wish more after care was given as there was really no support at all. 

I’m so so sorry to read of your hair loss and experience. 
I was alerted to this by aheadofourtime.org

xx