Cold cap worked for me

I just thought I'd say that I have finished treatment with weekly taxol, and still have my hair. I had the cold cap all through. While I was walking to the loo with it on a woman said 'I've heard that doesn't work' and I know it doesn't for some people but I wanted to say it's worked for me. I wasn't sure I would bother with it at the start but I'm glad I did.

I took ice or my hands as well as I had heard that keeping hands cool can help with neuropathy and though I have some tingling I have just started knitting a lace shawl for my daughter for her wedding next year with no problems with my hands (a few with the complicated pattern 😣

I did only have 15 of the 18 doses. It's keeping the tumours stable but they are not all shrinking so I'm having a rest before other treatment is considered.

12 Replies

  • Good to read that the cold cap worked for you and interesting to read about icing your hands. I find out today if they are going to give me more weekly taxol and as I've had some Neuropathy already I may take an ice pack in with me. Is that what you did?

    I hope you manage to keep fit and well while your treatment plan is being reviewed.

    I bet your daughter is thrilled that you are knitting her shawl - would love to see the finished article.

    Clare xx

  • Glad you seem better Clare ....good luck with the taxol....Chrisxx

  • I have worked very hard to be able to speak again, still get fatigued and am on more pills than I've ever taken before.

    Each day is taken day by day but yes I am stronger xx

  • Glad to hear you are improving. Sometimes it is soooo slow. I just take ice cubes in a takeaway carton, put them in plastic bags when I get there and hold them when the taxol starts going and for about an hour after (the cold cap stays on for an hour and a half). It gets a bit messy as they start to melt so I take several old tea towels and an old ordinary towel. I empty the bags out as it unfreezes but some does spill. In tried using those freezer packs that go in picnic bags but I felt the ice cubes in bags wrapped round my hands better. Very low tech and virtually no cost but it seems to work. While they try to find the right size cold cap and the right size cover I am tempted to suggest I just put ice cubes on my head but they already think (know?) I'm a bit weird.

  • That's so good to hear xxx

  • great....maybe you'll be fit enough to participate in the trial! (unless you have to be chemo free!) x

  • Congratulations on the success with the cold cap, I'm really pleased it worked for you as it doesn't always. I have neuropathy in my hands and feet and find keeping them warm is really effective, just shows we are all different.

    I too knit, I find it really helps with the neuropathy in my hands, just need to learn how to do it with my feet now 😂. I do some knitting for premature babies and some of the little hats mittens and bootees are a delight to do. I'm sure your daughter must be thrilled you're making part of her wedding day outfit, maybe it could be saved as a christening shawl for future needs 😊, an heirloom in the making 🥂. Keep up the good work, take care and keep well ❤️Xx Jane

  • Hope not christening as she has 4 already, none christened and oldest nearly 19. Unless it's for the next generation 😄

  • Hi Lesley - how good you kept your hair! My next step is probably weekly taxol and I'm not looking forward to the hair loss again. Will have to dig my wigs out from the back of the wardrobe as I don't think I've got your determination and strength to do the cold cap. Well done!

    I'm interested in the other possible treatments you mentioned. Would you mind telling me as well? I'm currently seeking a second opinion so would be good to go armed with more knowledge...

    Caroline x

  • Etoposide is the one she mentioned. I've had caelyx and that didn't work for me though it seems to for most people.

  • Lesley this is great news to hear. I've had my first session of taxol, and used the cold cap. Really hoping it works, and it is great to hear your story. Did you do anything special between treatments to help your hair, and have you noticed any thinning?

    Would really appreciate any advice you have :)

  • No I did nothing else apart from not washing it frequently. It's thinner anyway from previous treatment but hasn't got worse. My hairdresser says she has clients whose natural hair is thinner than mine and they'd be glad of it so stop complaining 😊

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