Hi everyone. Had my first chemo treatment 3 weeks ago and sailed through with the cold cap without any problems. Had my second treatment yesterday, again with the cold cap, but the experience was completely awful and was painful throughout. Nurse said because i now have a lot of thing hair (started shedding 3 days before 2nd treatment) it was probably because there was more direct contact with scalp.
I took paracetamol beforehand, wore a fabric headband at the top of my forehead but neither helped. Because of the two drugs I am taking during chemo and the 2 hours added to the time, it was a very long (and distressing) day.
My question is what are others experiences with the cold cap, especially if you could not continue with it. Did it effect your hair growth?
Ps I have already purchased a wig as the hair is really thining and getting patchy.
Thank you x
Hi Positive vibes
I used the cooling cap during my chemo in 2022.
I found it more painful once hair was thinning as the more hair you have, the less contact there is with your scalp. I took paracetamol which helped. My hospital used to put on a theatre cap to protect any thin patches and that did make a difference. By the fourth chemo I must admit I did struggle for the first 30 minutes and wanted to pull it off but a nurse sat with me chatting and it distracted me. I also took deep breaths and tried to focus on my breathing. Once the numb feeling started it was manageable again. By then I would have felt annoyed with myself if I had given up because I just felt with what I had already gone through it was worth finishing it.
Only you can decide if you want to continue. You could try a theatre hat and ask if there is any stronger pain relief you could try and if after 10 minutes or so, you really don't like it, then you could take it off. I was always told that if I didn't like it, it could be turned off immediately.
It was explained to me that the reason I was keeping hair was down to the scalp cooling and if I did decide to stop then it would effectively be as if I hadn't used it and for my regime that would have meant total hair loss. Any regrowth would be as if I hadn't used it. Scalp cooling would only work if I persisted all the way through each cycle.
If you have had enough, then stop. It is good to be prepared with a wig and maybe have a look at some scarves, beanie hats etc. I purchased a silky pillow case and that helps because your scalp can be sensitive. How many more cycles have you got? - that would be a factor for me. Scalp cooling is not for everyone and dealing with hair loss in a way that is manageable for you is the best way.
With regrowth, I found that hair started regrowing between the 2nd and 3rd chemo so although it went very fine and I did try out a wig during this time- the regrowth meant the patchiness filled in within a couple of weeks and that along with a theatre cap meant I could continue. Regrowth continued between each cycle. I continued shedding with each cycle but never had bald patches. About 6 weeks after chemo my hair stopped shedding and started growing in thickly and fast. I kept my hair shoulder length throughout.
Hope this helps- good luck whatever you decide.
Jane
