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Pengiun Cold Capped and have lost 50% of my hair 20 days post first TC

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Does it keep coming out? With each chemo session (my 2nd one is tomorrow) will I just lose the other 50%? It's so disheartening. I was prepared to lose some hair…. but I wasn't expecting to lose so much it early on. Right now the bald spots are at the nape of my neck so it is covered by the rest of my hair. But if I keep losing at this rate after each treatment I won't have anything after my second session. I have followed instructions to the "T". I even wear a cold cap when I exercise … take a bath…. take a walk … any time my body temp may rise. Silk pillowcase, wash once a week, cold water, etc etc.

And once I lose it all do I keep doing the cold caps for the last couple of sessions? Or is it pointless?

Thank you for any advice!!

Comments

  • mandy23
    mandy23 Member Posts: 113
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    Hi @bossmom3 !

    Sorry you are here, but glad you have found us.

    Everyone is different, so your experience might be different than mine. However, in my experience, using a cold cap with TC and cold-capping (I used Paxman), I lost the majority of my hair just before my 2nd treatment, so it sounds like that's where you are at. I have never heard of wearing a cold cap other than during treatments and I don't think that is helpful….maybe even could be harmful? You're trying to prevent the drugs from getting to your hair follicles. By the end of the treatment—with Paxman I kept it on for an extra hour (if I recall correctly), any 'damage' has already been done, so wearing it any other time won't really help. Taxotere is especially hard on your hair. I would keep doing it. I do feel like it's nice to have 'some' hair—not so noticeable under hats, etc. as having none would be.

    The struggle continues for me to regrow mine….now 8 months post-chemo. Sigh.

    I think you have seen the worst of it. Hang in there!

  • bossmom3
    bossmom3 Member Posts: 4
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    THanks for your reply. I was told to wear a cold cap (not the actual cold cap but like a migraine cap I got from amazon that I store in the freezer) by my cold cap rep. It's a pain and doesn't seem to help anyway. But I appreciate your insight and advice and I am going to cold cap again tomorrow for my second infusion and hope this massive shedding stops soon. I felt so stupid for crying about it…. but I'll admit it… i cried.

  • mandy23
    mandy23 Member Posts: 113
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    Hey @bossmom3 -

    Believe me….we all cry. No worries there. The whole experience is so stressful. I went through the same doubts about whether it would all fall out and whether I should continue. Fortunately, for me at least, it really slowed down to just a few strands here and there after that major loss of hair. At least with some hair left, I've found I am now able to use wide headbands and do comb-overs while I am at home not wearing anything on my head. I think having some hair helps my self-esteem.

    Hang in there. You've got this! 😊

  • bossmom3
    bossmom3 Member Posts: 4
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    I had my 2nd dose of TC on friday and just did a cold hair wash today and lost just massive amounts. I probably have 20% of my hair now. My cold cap rep thinks it's because I have been working out too much. I guess taking an hour walk a day and occasionally doing a 30 min yoga is working out too much. It's devastating. And she informed me that if I just throw a wig on to leave the house I will lose all of my hair. It's a lot to deal with. How do you move through life without making yourself a recluse? She said wearing a hat or scarf will also lead to more shedding… but I only have 20% more to shed…. what did any of you that did cold capping without success do?

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53
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    Hello Bossman3 - I had 4 rounds of TC in 2019 and also used Penguin Caps. I only used the caps on the day of the infusion - both before the IV began and for an hour or two after. I had VERY thick, long hair; and I probably lost approx 70% - 75% of it. And it was devastating. Even so, I continued capping till my treatment was finished to help with hair regrowth. I think it did help… My hair grew back quickly and the shorter pieces layered in with what was left of the longer strands. During and after chemo, I used long, wide, chiffon-type scarves as headbands. Tied very loosely. I also used the cardboard-type hair bands (also wide) - without “teeth” and also not tight. This wasn’t my best look, but it helped to hide the thinning and it didn’t overly stress my remaining hair.

    Hope this helps and best of luck to you!!!

  • moderators
    moderators Posts: 8,290
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    Hi @bossmom3, and welcome to BC.org! We're glad you found us, and appreciate your participation.

    Besides the great responses you got here in your thread, many members in our community have shared their experiences and tips in a popular thread called 'Hair Hair Hair - Another question?' that you might find helpful and very informative. It hasn't been active since September 2023, but this could be a good moment to bring it back to the active topics! 😊 Hope it helps. We're looking forward to hearing back from you soon!

    The Mods