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  • Camasid
    Camasid Member Posts: 4
    edited October 2020 #22
    alicia2020 said:

    Good morning, Ladies!

    I sure appreciate the conversation about cold capping to prevent hair loss. My GO was dismissive of it immediately saying, "It doesn't work, and insurance won't pay for it." Aside from irritating me by acting like hair is not a big deal, it always insults me when people assume I give a rat's bottom about the cost of something!

    I had seen a video on YouTube a while back for that system ...Penguin Caps? And it looked like a ridiculous amount of trouble and required a partner to do all the work...which 1) I don't want to do that to my sweet husband, and 2) with the darn virus out there it's a moot point because my doctor's office won't even let my husband come in for appointments, so I could not accomplish the tasks by myself. I looked up wishcaps and was relieved to see that it's basically just a beanie type cap and I could easily do that by myself. So, I'm thinking I might try it,  And since I'm in Houston it would be very easy to cancel and return the equipment if I decide I can't stand it.

    Love to hear any other hair tips you have, my friends!

    xo, Alicia

    Cold capping, in Houston

    Alicia,

    im doing the Penguin caps and it it absolutely requires a partner.  If it's important enough royou, the infusion itself can be done at a different facility.  I'm staying in the Houston area right now. I have an extra sub zero temperature gun I'm happy to lass on for free (the included thermometer is not very good, so I suggest you invest in one) and extra ear protectors.(Some worm use maxi pads to rite the their ears. I found clip on, tiny ear muffs that work wonders). I'd be happy to share the list with you, and if you need anything last minute, I'm happy to share.

    M.

  • thatblondegirl
    thatblondegirl Member Posts: 383 Member
    #23
    Thx, Camasid!

    Thank you! I would like that list of the extra things I would need to do the cold capping, please!

    I haven' pursued this subject most recently because ....as you might have seen in other posts on this board...I was just informed that it will be another two weeks from today before I get my final pathology report and then am entitled to have a conversation about my chemotherapy. Up until now I have been told it was WAY too early to have a conversation about it. Because I know my ONC has such a negative attitude about it (that it doesn't work), I need to be sure they will even allow it. I know they do approve of icing hands and feet. 

    I don't know if I'll be able to tolerate it, but think I should try. I'm prone to awful headaches brought on mostly by stress and strain in the muscles of my shoulders and neck. The ONLY thing that resolves that pain is long hot showers. Sometimes it's so bad, I end up washing my hair even when doesn't need it just so I can stand there for while with hot water pounding on my head! All of which would be very counterpproductive to saving my hair! Still, I'm telling myself that 6 days of that pain (6 cycles of chemotherapy) might be worth it to avoid waiting for 3+ years of waiting for my hair to be back to what it is today.

    What do you think? Did you get headaches?

    Thx! ❤️, Alicia

  • Primavera
    Primavera Member Posts: 231 Member
    edited October 2020 #24
    Camasid said:

    Hair problems

    Thanks for the reply and the link.  I am using a conditioner that is recommended for chemo.. natural, ph balanced, and no irritants. The issue could be that I'm undergoing AC chemo for BC and the chemo is just very strong. The only place I could find any information of knotting or matting was on the Paxman website.  Paxman is one of the scalp cooling machines approved by the FDA a few years ago. they have prettydetailed description what exactly what I'm going through and some advice about how to deal with it, but very generic. (My hospital doesn't have Paxman available for use with AC chem, so I'm doing cold capping on my own.  If I'm able to keep my hair through the AC chemo (have two more infusions left), then I'll be able to use Paxman scalp Collins for the second stage of my chemo (12 weekly chemoS)).

    Same treatment?

    I had uterine cancer last year but didn't need any chemo. This year I was diagnosed with BC. I seem to be following the same treatments you're following. I just had my third treatment of Adriamycin/cyclosphamide. I have one more to go. Then I'll have 12 weekly treatments of Taxol.

    I decided against the hair cap because I wanted the medicine to get to every side of my scalp. They offered it at my center for $400 a session. After I said no, oncologist said "good, because it doesn't work all the time."

    But I keep on checking about people who are using it just so that I know if it works or not. I already lost most of my hair. But after the 12 weeky Taxols and surgery and who knows what else, I'll also have another IV treatment for for a year every 3 weeks; I think it thins your hair, so I want to keep on knowing about cold capping just in case.

    I'll be curious to know how your hair is going, so I'll keep on checking your reports.

    I'm doing the hand and feet icing (with gloves and booties and gel inserts) to avoid neuropathy. I've read about all that pain and I don't want it.

  • Primavera
    Primavera Member Posts: 231 Member
    edited October 2020 #25
    Alicia

    I have breast cancer now, so I read the breast cancer forum, although people are less likely to answer posts over there. But here's a recent cold capping thread I'm following for the future (after chemo I'll be having Herceptin for a whole year; it thins your hair, and I might need to do this, who knows?). I didn't know there were restrictions on washing your hair and a few other things. Maybe more people would come to post and reading their experiences will help you avoid the problems they've had.

    https://csn.cancer.org/node/322401

  • thatblondegirl
    thatblondegirl Member Posts: 383 Member
    edited October 2020 #26
    Thx!

    Thank you, Primavera! I will check it out!

    I'm still 3 days away from my appointment for final patholog & a time when I can ask for "permission' to coldcap. I'm going to call the wishcaps people on Monday...I'm in Houston, so if I have to drive downtown...instead of waiting for shipping!...I can!

    Hooe your treatment is going well!

    xo, Alicia

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