2nd recurrence and Cold cap???

Hi ladies

I had my results last Wednesday and it's back! 😢

I have a scattering in my abdomen like last time and have been told I have to have 3 weeks of taxol and 1 week off for 6 months! I had carboplatin last 2 times which gave me a remission of 2.5 years then this time only 1 year so he doesn't want to use carbo again this time and use taxol only.

I'm terrified of losing my hair as it hasn't happened before and I know it will with taxol.

Has anyone out there used a cold cap and has it worked? I've been told it can leave you patchy and if that's the case then it's not worth it but I'm only 44 and like to look after my appearance so my hair is so important to me. I would be grateful for some tried and tested results ??

Thank you all you kind ladies out there

Xxx

24 Replies

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  • There is a lady that gets cold cap next to me on treatment days her hair is a bit thinner but not fell out I was surprised how well it worked worth a try no pain no gain that's her motto hope this helps xx

  • 👍🏼 Fab thanks x

  • I may be wrong and I so I'm sure someone will tell me !! However I understand that weekly taxol is at a lower dose than three weekly and that ladies may get thinner hair but not necessarily lose it. (That's also on the Google search I just did!)

    If thats wrong then I wil now run off!!!

    Might be worth also ringing the OvaCome helpline tomorrow

    Take care

    Clare

  • Hi Jo,

    So sorry you find yourself back on the treadmill! I had weekly taxol and carboplatin (three weekly) and I didn't lose my hair, but I did use the cold cap which is fairly uncomfortable and adds time to your treatment, I think if I hadn't used it I would have lost my hair, my Onc said I would lose it anyway and tried to put me off using the cold cap, but the nurses were very encouraging and wrapped me up in heated blankets to keep me warm. Right until near the end I hung onto most of my hair, it became quite thin in the last month of treatment, but I kept it shoulder length and wore it up with a fake curly short pony tail thing so nobody really noticed. I did however lose every other bit of hair on my body, including eyebrows and eyelashes! So although it's a reduced dose having it weekly its accumulative and got tough towards the end, bloods were shot...but I did keep the hair on my head, the day after my treatment finished I had a trim and had a few highlights a few weeks later, no one really knew I was on chemo unless they were close to me. It all grew back fairly quickly as well.

    I wish you well with your treatment:)

    Take care

    Andrea xx

  • Thanks Andrea, all the encouraging posts on here have made me decide I'm going to give it a try even though my onc wasn't v positive about it and nor was the CNS , I wish they'd be more encouraging as they haven't been much help to me even though they know I've never lost my hair before so I'm new to it all xx thank you again, all the best to you xx

  • Its strange that Oncs don't encourage it, the chemo nurses were great though, and were so pleased with the results as they said I was the most successful one so far regarding hair loss and asked if they could use my experience to encourage others to have a go! It is tough though but after the first 5 minutes you get used to the cold, its not for everyone but its definitely worth a try:)

    xx

  • My friend is doing it and her hair has thinned but you wouldn't notice. I always said I wouldn't bother with it but It has changed my kind. I think it's tough going but she is glad she is doing it and she looks great x

  • Thanks Julie I really do think I'm going to give it a try, nothing to lose other than the obvious! X

  • Having lost mine once, I'd hate to lose it again. Although they don't offer the cold cap at The Womens'.. xx

  • Hi. I used the cold cap and I didn't lose my hair. It went a bit thin on top and I cut it a bit shorter to stop it being so heavy (it was very long before). Tips that I found worked were to take a couple of paracetamol before they put the cold cap on - this took the edge off the pain. This brain freeze pain only lasted about 10 minutes. The main thing is that I got so cold - I took willy socks, cardigans, a blanket and the nurses gave me a heated blanket - this was in the summer too! I also took a hat to wear home. Before they put the cold cap on you smother your hair in conditioner and then I didn't wash it for about 3 days afterwards. It did look a bit rubbish but I wore hats and scarves. Another tip I got told was to use satin or silk pillowcases as your hair doesn't pull so much on them. Hope this helps. For me it was definitely worth it. I've just started chemo number 2 and I'm using it again. Good luck xx

  • Hi Becky

    That's really great advice and just what I need thank you as my cns does seem quite negative about it but I think I'd like to try it, it's got to be worth giving it a go hasn't it.

    I've seen some of your posts on here and with you all the best with your second lot of treatment, hopefully I should start mine in a few weeks all being well.

    Xxx

  • Hi Jo - I had the cold cap and kept most of my hair but please make sure that the cap is the correct size, it has to touch your scalp or it doesn't work. I went thin on the top but used Viviscal hair fibres which were brilliant.

    Good luck

  • First, I am so sorry to hear you've had another recurrence. I had the same chemo weekly and I didn't lose all my hair. It thinned, but it didn't all fall out. There are some really nice stylish wigs that look really natural if you do lose your hair. Hope this is helpful, and I wish you the very best as you go forward with your treatments. Kim xo

  • Hi Jo

    I too used the cold cap and it worked well for me, but I do have very thick shortish hair. It thinned a little on the crown, you really need expert help in putting it on as it has to fit tightly. The first 10 minutes, especially the first time are horrible, but it is amazing how quickly you get used to it. My treatment was over Summer and I didn't need heated blankets or anything, just a cardigan. Do have a hat for going home with wet hair and take in conditioner and a comb. I have to say your hair isn't great and goes a little dull but it is hair! My hairdresser was lovely and gave me a shortish cut and got organic hair colour in especially for me. I think having weekly chemo treatment is better for using the cold cap. Be aware that it does add extra time on too. It was really worth it for me and I would do it again. All the best to you for your treatment and let us know how you get on.

    Sophia x

  • I didn't use a cold cap as it was not available at my oncologist' treatment center in US. I did, however, ICE MY HANDS!!! I am a professional artist and if I cannot draw and paint I'd become profoundly depressed, as if OVCA is not depressing enough already!!!! Anyway, consider icing your hands (and feet) because I have NO neuropathy in my hands. Sadly, I wasn't thinking and should have put ice bags on my feet as well because I now have neuropathy there. Tesla

  • I used the cold cap my hair did go thin but not patchy and no one knew I was haveing treatment. I'd definitely give it a try , wishing you all the best.xx

  • I had weekly Taxol a couple of years ago, decided not to try cold cap, & didn't lose all my hair, but what I did lose was rather patchy, & it was obvious I had some hair loss. Di

  • Hi

    I have been using the cold cap while on weekly Taxol.It has thinned a bit, but it is not patchy.I have kept it short to make sure the cold really gets to the roots. Also use ph neutral shampoo....make sure you have the correct size cap.....it is uncomfortable for the first 10 to 15 mins or so but then it's ok.Sometimes I ask if it has gone off because it does no feel cold at all.It is only when the cap comes of and there is a little bit of ice on my head do I know it has been really cold..........I finish my regime next week after 6 months.Best of luck with It I hope it works for you.

    Georgie

  • Yes, cold cap works. I am 5.5 weeks from my 1st chemo and still have a full head of hair. Great for self confidence.

  • Yes the cold cap seems to work, so far, at least for me. I'm on the same regime as I got allergic to carboplatin and then caelyx didn't work so that was stopped after 4 infusions. The reason I think the cold cap works is because I have lost almost all my pubic hair, but hardly any from my head 😉

    I also take ice for my hands to try to prevent or at least reduce neuropathy. And a blanket to keep me warm, with all that ice around.

  • Thank you all so much for your replies, I still want to be able to colour my hair as can't stand having any grey so would I still be able to do that? Xx

  • I tried cold cap on starting this regime which have just finished last week. Did not work for me as lost hair within 10 days. Did not lose hair with previous chemo for bowel cancer, carboplatin.| I have 3 brilliant wigs and so not worried about waiting for hair to grow back. Not everyone loses their hair so give it a try.

  • Thanks, yes I've decided to give it a try anyway as might as well but going to have a wig lined up so I'm not without it if I need it. Tried some on on Thursday and have an appointment somewhere else on Monday. Don't mind paying for them as they look so much more realistic. Thanks for your message and all the best to you!

  • Good for you. I am going for my fourth wig on Friday a longer one so can put hair up. Think they are so good. I look tons better in my wig than my original hair!! Lots luck with everying.

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