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I have lost my hair 3 times in 5 years.  I have been fortunate to have had 2 nice wigs but wigs are still wigs!  Each time my hair has grown back without issue but slowly.

I am now facing chemo again - recurrence #3.

My question  -- has anyone flat out refused chemo drugs that cause hair loss?  I really don't want to go through it again.  Call it vanity but I feel very strongly about it.

@Camper62  That is a good question and not sure it has been posed to the group before. I am not sure if that would or could be a reason to refuse chemo. If you do find out the answer to that, please post it. Losing one's hair can be difficult for sure, vanity or not. It is your hair and part of your body and does make a difference when talking about symptoms and recovery. Wigs are not comfortable from what I hear.  I ended up wearing bandanas/hair cover or going commando. I didn't want to do the wig and everything that came with it.  I did fine with my decision and managed okay. People stared no matter what and I got over that quickly too. I had to do it only once though not multiple times. So I am sure it can get tiresome and waiting for the growth to come back slow in the process. I wish you the best whatever your decision is. I hope your team supports your decision as well. Take care in the meantime. 

Hi Jane @Camper62

All the best wishes on journey #3 for you.  I hope Caelyx will be kind to your hair, my fingers are crossed!  When is your first treatment?

Cycle 3 is in two more weeks for me and so far, no hair loss using Carbo/Caelyx.

Thanks for finding this information @Tanja!  It's disappointing to see OC is getting missed out trials 2 and 3 for Zelenirstat :( 
Bummer news for us Teal Sisters.

Hello @Camper62

I am on recurrence 2 and this time my combo is Carbo and Caelyx.  The Caelyx (I call it orange Kool-aid) is not as horrible as Paclitaxel.  I was very reactive to Paclitaxel and lost my hair first round.  I still find chemo makes me feel very hot, so there was no way I was going to wear a wig - too itchy/scratchy feeling and make me feel too hot.  I wore head wraps when I was out in the sun - much softer on the scalp so much more comfortable.

So far the Caelyx hasn't caused me any hair loss and I've had 2 chemo treatments.  It's possible there could be some hair thinning, but so far no loss like with Paclitaxel.  You may want to ask if Caelyx could be a med that would work for you?

Dear Camper62, I sympathize and can honestly say that I was very unhappy with the idea of loosing my hair again. Not just that but eyelashes, eyebrows etc. and generally just feeling, looking like a cancer patient. Even with wigs and silk scarves. I lost my hair originally during the second cycle of carb/Taxol but it was manageable, and again with carb/red devil but not with Gem/Bev. When Dr Tinker suggested another round of Taxol she recomended a Cold Cap to prevent hair loss seeing my reaction. I asked about oral chemo or radiation and as it turned out both may work for me with no hair loss.

I will start 5 radiation treatments on my lungs and 5 on my pelvis, with the hope that it reduces the tumours or prolongs my time off chemo. If my MRI and colonoscopy show spread to my colon that would require 25 more!

Anyways how you feel is what is important and whatever you decide is very personal. Wishing you all the best.

Lauren 🙏🩵

@Camper62  
Whatever your decision is, I hope you are content with it and that the decision for chemo meds goes along with it. 

@florence2022  Sounds like you have some decision making to do as well. I hope the lower radiation treatments work and that you will not show spread to your colon which would indicate more treatments. You are correct, how you feel is important and personal and I wish you all the best in the decisions you make when it comes to your treatment. 

Take care