Just a quite question - I am using the cold cap and have just finished my 3 regimes of FEC and just had my first regime of TAX (with a further two more to go). The nurse yesterday mentioned that if I thin anymore on the crown I should think of not using the cold cap anymore as they would rather not freeze the top of my head.
This has just sent my head into complete tizzy that I may have caused more harm and have been trying to think back to anytime when it has been really uncomfortable…
I know these thoughts could have something to do with the fact that I have not slept properly for two nights due to Steriods.
But just wondered did anyone stop the cold cap mid treatment and if so did you hair come back OK? If you perseved with the cold cap did you have very thin patches which have come back OK?
Sorry if this has jumped everyone – but hope you can understand what I am trying to ask (in a not great way)
I too used the cold cap when I had chemotherapy. I stopped after 3 sessions, half way through. The cap didn’t fit me too well so I found that the hair on my crown thinned much more than the sides. I began to look like a monk and with the top thinning, the cold from the cap became unbearable. I decided to stop and I did lose my hair. It did all grow back and I had no bald patches at all. I found that the cap extended the time before my hair was lost but it was not in very good condition so I decided I was prepared to lose it and look forward to a new healthy head of hair after treatment.
I hope this helps.
I haven’t been advised to stop in this way, but I do have experience both of the cold cap and of losing my hair. I imagine the nurse was thinking of your comfort with her comment rather than implying the cold cap would do you harm.
I first had chemo in 2008, and didn’t use the cold cap. My long (bottle) blonde hair thinned after the first round, and then came out much more after the second at which point I clippered it, and several days later it all came off just by stroking my head.
This time around, I tried the cold cap for two rounds, but found that a) my hair was thinning quite badly and b) the hair I had left was a dreadful mess due to the not washing, no products, no heat etc regime. Putting these two facts together, I decided I would rather lose my hair again than go through months of half hair in awful condition (and horrid tepid showers!). I think because I’ve been there once already, it wasn’t as frightening this time, and once I had braved the clippers again it actually felt quite liberating.
I have 3 wigs now - 2 from last time and a new one, all of which I have had styled by my normal hairdresser, plus a range of hats (Suburban Turban are excellent) and buffs, but I also go out bareheaded too, which I never had the guts to do last time (I still have a v short and thin almost covering of hair, so at least I have a visible hairline for now).
It’s bliss to be able to stand under a hot shower again, and it takes no time to dry my hair now, plus I’ve got a whole range of different looks! Being bald would not be my choice in other circumstances, but now that I am it is not really so bad at all.
Sorry for rambling on a bit - hope there may be something useful for you to help decide.
My 2 Boys - I used the cold cap throughout my EC treatment, was losing hair dramatically so had it clippered after number 3 or 4, then continued with cold cap but used a paper surgeons cap then the cold cap. I was advised this by manufacturer who said it is normal practice to do this … it stopped my head from freezing but still saved the hair. I am now four weeks post chemo, my hair is still clippered short but it is coming back much faster than if it was bald. Please tell your nurses to do this if you want to continue. Contact the manufacturers if you like, but am sure they will tell you the same. All the chemo nurses told me, had I not used the cap I would have been totally bald.
By the way, it was so much better once my hair was clippered. Much less distressing. (It was sort of sinead o’connor short)
I am pretty sure it’s more of a comfort thing than doing damage - but double check that! I used the cold cap and had a decent covering until sessions 7 and 8 when the nurses offered to put some gauze on the top of my head, but I declined and just went for it.
My breast care nurse also said that even if you lose alot of your hair that the cold cap means it grows back quicker as the follicles have been protected from the chemo each time.
Don’t know if that’s true. But I’ll see how quickly mine comes back!!
Thank you so much for all your positive comments on what when I read it back looks like the ramblings of a mad woman
Well today a new day and I am just going to see how things go in the next three weeks – and take it from there… If I have to stop now I only hope that the hair comes through a little quicker as it wouldn’t have been blasted with two many chemo treatments…
Angielav – I must admit I still haven’t clippered it short so that probably doesn’t help with the amount of hair that I see – although I tie it back after a quick comb so I don’t play with it – the nurse did put gauze on the area on Tuesday but when I spoke to my friend who was with me she mentioned that it was a comment not a suggestion I just picked out the words I wanted to hear! Glad to hear that your hair is growing back well after 4 weeks – I hope that I too can be in that club – are you using anything special?
Sandytoes - many thanks for responding as well I believe we have spoken before on hair and cold cap issues – glad your hair stuck around for sessions 7 and 8 – have you now finished? If so when and how is the hair at the moment?
You would have thought with everything else going on with BC that I wouldn’t be so worried about hair!
Love and hugs to all
For what it’s worth - I used the cold cap over the summer during 6 FECs, I already had short hair and got it cut really short before starting chemo and kept it short throughout. I got very thin on top but the back and sides stayed pretty thick almost to the end. Around about FEC 4/5 the nurses started putting some gauze pads on the thin bits on top of my head as they said I would get scalp burn otherwise. It got sooo cold for the last 2 cycles especially … but I stuck it out cos I wanted my hair back to ‘normal’ asap, I knew I would be going back to work after chemo and my kids hated my see-thru head (I of course loved it - not!).
I had another haircut just before FEC 6 and the short layers helped to cover the thin bits so well that I actually didn’t notice until last week that I have about half an inch of fur coming through the fluff - WOO HOO! A month after finishing chemo my hair looks almost normal apart from the not-particularly-flattering short style and more-than-I-would-like grey hairs - but that’s good enough for me - so stick it out it’s worth it. I think when you finish chemo you just want to eradicate every memory of it from your life and the hair thing is a constant reminder - so good luck!
Cateoo, many thanks for your response – I think you are completely right in saying that when the Chemo is finished you just want to eradicate the memorys of Chemo… I hope that I have just as good as response to the cold cap as you – well done on fur coming through a month after finishing chemo…
I think I will perserve and see how this go – I too am going back to work after all this joy!! has finished and would rather look a little normal with a short hair style rather than wearing a wig but that is my personal choice.
Thanks everyone for giving me the strength to carry on with the cold cap