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Scalp cooling - should I stop, done 11 chemos and 5 to go

FleurDKFleurDK Member Posts: 5
Hi BCNA community, Thanks for all the helpful advice re scalp cooling. It helped me decide to start and perserve with it this year.

I've done 11 chemos (4 x AC and 7 x Taxol) with 5 Taxols to go. At my last chemo the nurse sat me down for a quiet chat and said they were reluctant to continue with scalp cooling as I've lost over 50 percent of my hair (their advice is not to continue after this much loss as I could burn my scalp). Thanks to advice on here, I've been using gauze over any spots that are thin so I haven't burned my scalp (they did warn me about the burning about 6 chemos ago but I've been fine with gauze). It looks like I'm getting some regrowth now too, a few mms in some areas and mostly grey.

My questions are:
1. Should I persist with scalp cooling if I'm getting regrowth during Taxol, is it regrowing only  because I'm doing scalp cooling?
2. Has anyone actually had experience with scalp burning while using gauze for any thin areas? How bad is the burning?
3. If I am getting some regrowth surely I have more coverage to enable me to continue with scalp cooling?

I do feel the nurses find it a bit of a hassle (not many people seem to use it at my day treatment unit) but at the end of the day they are willing to support my choice as long as I understand the risks.

Also, I've kept enough hair that I generally wear hats out and about as I have enough wispy hair that makes me feel more confident. However I do pop on a wig if I am on a work call or going out in the evenings. Thanks!

Comments

  • Christabel03Christabel03 Member Posts: 32
    Hi @FleurDK
    I didn't go ahead with the scalp cooling offered when I had my initial four rounds of AC so I lost all my hair but I will say when I switched to the weekly Taxol regime, towards the end of my 12 rounds my hair started to come back, slowly at first but then quite a bit. 
    I know this may not help your decision but thought I would share anyway as it seems perhaps hair does grow on Taxol without cooling. 
    Take care and good luck for your last few rounds :)
  • AfraserAfraser MelbourneMember Posts: 3,967
    @FleurDK
    I didn’t have scalp cooling and my hair started growing back during Taxol. I didn’t expect it but it seems it’s quite common. Best wishes. 
  • Cath62Cath62 Brisbane Member Posts: 881
    Hi, I think this is a very personal decision. I didn't use cooling. I lost all my hair and shaved it in advance. I had 3 AC and 9 taxol. I did get a couple mm growth with taxol but seriously wasn't what I would call coverage. If you stop cooling have the nurses said the rest of your hair would fall out? I think for me I would perfer my hair evenly growing rather than patches but these are all very personal choices. Go with what you want and what you think is best for you. Best wishes 
  • FleurDKFleurDK Member Posts: 5
    Thanks all for your helpful comments, it's good to know it's common for hair to start growing back during Taxol treatments.
  • MazbethMazbeth BrisbaneMember Posts: 194
    Hi @FleurDK I did not have success with the cold cap, however, for what it’s worth, I think as long as you are happy to keep going and it isn’t causing you ‘pain’, you should keep going as you have done 11 treatments. Yes you have lost about 50%, but you may not lose much more. When you finish the next 5, you will have patches, but you will also have hair to style around the patches and you will have a head start on the regrowth. You can wear hats and hair bands and I think if you had your remaining hair cut a bit shorter, you will be able to blend the old and new hair. I know it takes the nurses a bit of time, but this is also about supporting you. My hair grew back on taxol. I think you reassess each week. I think you will be surprised that when you finish, you will have some hair and a hairdresser will be able to work some magic and blend it. I grabbed some tinted mousse and rubbed it through my ‘new’ hair and I also bought a volumiser product as well. All the best, you are almost there 🌸
  • Chrissy1121Chrissy1121 BrisbaneMember Posts: 18
    Hi @FleurDK it is a personal decision and you have done so well. I used scalp cooling and I was very pleased with my results.12 x Taxol sessions.  I had a strict routine I stuck to each week and was very particular about the fitting of my  cold cap, good conditioner and had great support by the nurses. I always arrived with wet hair and conditioned myself and combed through before the cap was fitted. It was a positive experience for me and a good team effort on the day. There was discomfort, but the nurses would give me warm blankets and even a tablet to ease any anxiety if I needed it. I'm glad I decided to do it and stuck to my plan every week during chemo. Best of luck.
  • FleurDKFleurDK Member Posts: 5
    Thanks Mazbeth - will try the tinted mousse! And Chrissy so glad to hear scalp cooling worked for you.😀 I never wet my hair as the nurses said you didn't need to with the new paxman machines, even though I had  read on paxman website that you needed to. Maybe I might have had more success if I had...

    My hairdresser had a look at my hair today - good news she said I have about 2mm regrowth all over and no patches but bad news is she doesn't think she can do much with the longer bob length hair i have left around the front, as there's not enough to style it. She suggests to let it grow a bit more and do a pixie cut.
    So I'm still undecided about scalp cooling tomorrow, although my two boys (6yo and 9yo) have given their advice that they don't think it's worth it anymore...
    Thanks every one for listening and your support and advice. 😀 
  • Ausmum2Ausmum2 QueenslandMember Posts: 56
    Hey, I’m late to this party but I was the opposite. Cold capping - I lost about 70% of hair on AC  and had the team encouraging me to keep going with the gauze etc for cold capping as it would help the hair regrowth on taxol and boy did it. My hair has come in thick and fast during the end If taxol and grown like grass since. It’s pure white but apparently the colour can change over time too. 
    It’s so thick and whilst I’ve passed through “poodle do” stage and it’s not regrowing straight, it’s actually amazingly healthy. 

    Good luck! 


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