Can anybody share their experience of scalp cooling and success/failure to hair loss

Hi, I have 1 treatment left out of 12 weekly taxol treatments, and have used the scalp cooling for all. Up to now I have lost very little hair, I know that it is a little thinner and that there have been a few more hairs than normal in my brush, but for most people looking at me I look like I always have. Although as I am normally blonde, I do have quite a bit of grey regrowth. Luckily for me it is pretty unnoticiable. The scalp cooling does add (in my case) an extra one and a half hours to my treatment time, and I havent found it overly uncomfortable( after the first 5 minutes). the Onc nurses where I go are very experienced with the cap and are supportive and caring in the use. it is important for the cap to be fitted well to minimise any hairloss.For me it has been worth the extra time to keep my hair, the only down side is because I dont look sick sometimes its easy to forget that Im not functioning at quite the same level as I did.It is not necessarily for everyone, but for me it worked and Im happy.

Dear OnNett, I started by just giving it a go. The cold didn't bother me. I got used to it quickly. No additional drugs, just for cold cap. I'm going to hang on in there. I've had 4 Fortnightly EC and 7 of the Paclitaxel. 5 to go. My hair is thinning a little. I've noticed it more over last 4-5 weeks. A few more hairs noticed in my comb. I've invested so much in this that I will continue to the end now. I bought a wig before Chemo, as I wanted to be organised as COVID came into full lockdown. I haven't worn it . I did have my hair cut shorter, as it is curly. I was advised that I wouldn't be able to blow dry and straightened, as I normally would do. So embraced my curls, for now.Things to consider, how painful the cold is for you personally, how much extra time it adds to chemo sessions (1 1/2hrs), And probably expect some hair thinning. If you continue with Cold Cap, make sure cap fits as well as possible (I've been using an additional chin strap to pull the cap down on my crown) Also make sure your hair is VERY wet, especially if curly. Don't wash your hair too often,I agree with Kazb. I haven't looked sick and people forget sometimes what I'm going through. I've been very 'lucky', and have tolerated Chemo well. I have had numerous side effects, but all manageable, so far.I'd post photos if I knew how. Good luck with your treatment. Take each day as it comes.

I used cold caps in 2015 for 18 weeks of paclitaxel and they worked really well. I lost quite a bit more hair than normal (like handfuls in the shower) but I have very thick hair so no one could really tell. Well, except for the fact that around the last week and following my eyebrows and eyelashes all fell out! It did add time to the treatment but I didn’t have anything better to do and I didn’t find it very uncomfortable. I did it so I would look the same to my young children and not look unwell to the outside world. Best of luck with it. I’d do it again in a heartbeat. I’d also add that while my initial regrowth looked quite grey and was a different texture, what came through after that was my normal hair.

You've probably decided by now, but for my 2 cents worth - it didn't work for me. I did it the first treatment - only just made it through because it added nearly 1 1/2 hrs to what turned out to be a long day anyway. 2 days before my 2nd treatment, my hair started falling out in clumps. I was literally 50/50 trying to decide whether to give it another go. Decision made, no, I didn't have to go through it again. Whatever you decide, I wish you the best result.

@OnNett my hair is very similar to kezmusc's, although shorter (just on shoulders). I only had to have 12 weeks of Taxol, escaped the early AC rounds. likes @kezmusc asked, what part did you find distressing? I was given meds before putting the cold cap on which reduced any discomfort. My onc said that even if there is hairloss the cold cap would help with regrowth. ?? Its not for everyone, but for me it was important to be able to keep my hair if i could.

Scalp cooling - hair loss | BCNA Online Network

19 Replies

OnNett
Member
6 years ago
I did the cold cap only on the first time. I decided not to continue. Dropped the stress I was having about it.
Thanks for everyone’s sharing their experience.
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Abbydog
Member
6 years ago
Dear OnNett,
What did you end up doing re Cold Cap?
Just interested. Hope you are managing with your treatment. All the best.
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Pamella
Member
6 years ago
You've probably decided by now, but for my 2 cents worth - it didn't work for me. I did it the first treatment - only just made it through because it added nearly 1 1/2 hrs to what turned out to be a long day anyway. 2 days before my 2nd treatment, my hair started falling out in clumps. I was literally 50/50 trying to decide whether to give it another go. Decision made, no, I didn't have to go through it again. Whatever you decide, I wish you the best result.
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Beaglemum
Member
6 years ago
Hi TeresaP yes i was on the same as you are going on - short name TC - i would recommend the cooling cap - as i said i lost a bit, went a bit patchy but overall would highly recommend it. If its not for you, you can always stop.
Wishing you all the best for your treatment - take care xx
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Abbydog
Member
6 years ago
Dear TeresaP,
My Cold Cap story is above. I'd say give it a go. You will know if you hate it pretty quick. The first half an hour is the worst. The temperature seems to drop a bit more about every 5 min during that first half hour. Apparently the worst hair loss is between second and third Chemo. So by then you should have an idea if it is working. Expect some thinning. Best wishes which ever way you go. Best wishes for your Chemo.
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Afraser
Member
6 years ago
Worth a shot! Wasn’t an option when I received treatment and I am not sure if I could tolerate the sensation, but lots of women have done so. End result is variable - from terrific to patchy. It may also depend on staff experience with fitting the cap. If you have the option, why not try it? If it doesn’t work or you can’t tolerate the treatment, you are no worse off than you would be by not trying. Best wishes.
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TeresaP
Member
6 years ago
I’m starting docetaxel and cyclophosphamide , is the scalp cooling effective for hair loss? As I’m unsure on what to do?
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Abbydog
Member
6 years ago
Thanks. I'm not up with all the abbreviations.
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Beaglemum
Member
6 years ago
'hi Abbydog TC is docetaxel - just another drug from the taxel family.
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Abbydog
Member
6 years ago
Dear Beaglemum, I am giving it a go. I will hang in there to the end. Only 5 Paclitaxel to go. What does TC mean?
Is that an abbreviation for Paclitaxel? It's good to hear that hair grows well after Chemo.
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