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Cold Caps Users Past and Present, to Save Hair

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Comments

  • jc254
    jc254 Member Posts: 332
    edited October 2015

    tshire, if you get to your second TC infusion with hair, the caps are working. Remember, not everyone has a major shed, some are more slow but steady. There's no predicting which you will be. I bought silica but never remembered to take it. For your next infusion, about 10 minutes before it's time to change a cap, take a cap out of its box and check the temperature. The caps aren't usually a uniform temperature, so check the middle where there seems to be the most gel. If it's not cold enough, lay it directly on the dry ice. It will cool down quickly. Only do this if you have the dry ice blocks wrapped in plastic otherwise you'll damage the cap. Hang in there... the waiting is hard.

  • astrogoddess99
    astrogoddess99 Member Posts: 8
    edited October 2015

    Tshire

    I found that putting the cold caps on dry ice earlier works. We have to put them on 4 hours before chemo, not 3. Since dry ice doesn't melt, you don't have as efficient heat transfer as you would with ice water. Also during the summer on hot days we needed more like 90 pounds of dry ice. The 20's are too warm.

    Also use newspaper or old towels to pack around the cold caps to fill in the gaps. I have chemo Mondays and buy my dry ice on Sunday. I use towels to pack around the dry ice to keep them longer.

    I take 500 mg of silica, not 750 that Geralyn recommended because I'm too lazy to keep cutting my 500 mg pills in half. I didn't take biotin (though my shampoo has it).

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited October 2015

    Tshire

    My helpers did what  jc254 said if the caps weren't cold enough they got the bag of dry ice and placed it directly on the cap it only took a minute or so to get the temp down to the correct temp. My Onc wouldn't let me take any supplements during chemo either my natrupath said that in the US naturopaths and oncologists work together but from what I've read on this thread a lot of oncologists in the US won't let you use supplements either. 

  • LRFTexan
    LRFTexan Member Posts: 57
    edited October 2015

    My scalp must have been frost bit because now it is scabbing at the part line. Also, my acupuncturist told me evening primrose was good for hair loss. I have not asked my oncologist about it yet. She is very conservative and not a fan of me cold capping. As my parents said, she is there to cure your cancer not worry about your hair. On another note, if anyone is having nausea issues I highly recommend the Sancuso patch, first round of AC and I didn't have a moment of side effects.

    Hope y'all have a good weekend

  • tshire
    tshire Member Posts: 54
    edited October 2015

    Well darn I wish I'd known this stuff before. I asked Geralyn if the temp would work (-20s) and she said she thought it would be okay. (??) We had the caps on ice for 4 hours and got the 80lbs. I'm wondering if my thermometer was off... it gave very different temperature readings within centimeters of the last reading. It was hard to know what the real temp was. Next time I'll be sure to put the ice directly on the cap (separated by a towel) if not cold enough. I'll try for 1 minute.

    Gosh I hope that wasn't all for nothing for lack of 10 degrees. :/

  • marietherese
    marietherese Member Posts: 11
    edited October 2015

    Hi All

    Looking for hospital recommendations in the NY. NJ, MA, CT area 

    Anyone travel to these hospitals to use cold caps? If MO says no to it, can you request it anyway?  My MO says they do not do it, because it just doesn't work. That does not seem like that is accurate. 

    Has anyone used a cold cap service in any of these areas? 

    MT


  • PatinMN
    PatinMN Member Posts: 784
    edited October 2015

    LRFTexan, I was told to change my part with every cap change, and I never got frostbite (or frostnip, as my Penguin rep puts it). Try to do that for your next infusion - not sure what you can do about your current scabbing other than to not pick at it..

  • jc254
    jc254 Member Posts: 332
    edited October 2015

    Does anyone remember Danielle's screen name?- (she was pregnant with twins). I think she was from the same area as MarieT and we could find out where she was treated.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited October 2015

    oh I picked the heck out of it! Hopefully I don't have any hair loss in those areas, I can't change it now. I will change the part next infusion-thank you. I have baby fine hair so I think my poor scalp just freezes quickly.

  • Angiel
    Angiel Member Posts: 175
    edited October 2015

    LRFT, I got frost nip/bite once and scabbed along my part line on the top of my head. I ended up not losing hair but the scabbing took a couple of weeks to work its way out. I used an apple cider vinegar/water mixture on it & I felt like that gave it some relief and helped with the healing. I also used a tweezers to remove the scabs when they began to release from my scalp. Very tedious. Like Pat said, changing your part with each cap change is key.

  • makingway
    makingway Member Posts: 465
    edited October 2015

    tshire-There is no one temperature the caps can be accurately measured-there is a range of varying degree throughout the cap. The range should be -32.0°--28.0° Celsius. It would take several minutes to cool a -20° C to the correct temperature. Be sure to wipe the cap dry before checking the temperature, as any frost will give inaccurate readings.

    LRFTexan-For your following treatments place gauze along your hairline where you had the skin peel. Unfold a 2 inch square of gauze to 8 inches, then fold in half and keep folding until you have a piece that is @ 1/2" X 8". Place the gauze just under the top of the moleskin to hold it in place. You do not need to change your part for each cold cap-it is too much stimulation to the scalp and can take too much time. The longer the cap is off your head the higher the temperature of your scalp raises. You can change the part for treatment.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited October 2015

    Ladies, I would like to get some advice. I am doing cold caps but I miss my normal workouts, Hot yoga and spin class which are not only good for my mind but my body. I have read we are not supposed to get our heads hot or let them sweat. Has anyone continued with their normal workouts and still had success. I DO NOT want to do anything that hurts my chances of keeping my hair but I feel like I am hurting my body at the same time.

  • mdg
    mdg Member Posts: 1,468
    edited October 2015

    I exercised 5 days a week at the gym all through chemo and after. I just gently clipped my hair back or up while I worked out. I did shed for a long time PFC but have no idea if that had an impact at all. Others that did not exercise still had long PFC shedding too. Keep exercising! It really helps you get through chemo.

  • Angiel
    Angiel Member Posts: 175
    edited October 2015

    I too exercised 5-6 days a week during my 5 months of chemo. I either put my hair in a loose braid or used a cloth scrunchie to gently pull it back. Normally, I ran 5-6 miles a day. I was very hot & sweaty when done and always rinsed my hair very gentlyin cool water to no ill effects.

  • pch
    pch Member Posts: 185
    edited October 2015

    Thanks ladies. I loved you all before the second part of this program. But then ... I guess I feel pretty lucky to already have you in my orbit.

  • hope49
    hope49 Member Posts: 239
    edited October 2015

    MarieTherese - I'm not located in your area but I'm sure some of our Northeast cappers will chime in. I believe someone went to Cornell and used the caps. Bottom line is that they DO work and if your MO won't support you, I would shop around. Many of us faced this and several changed centers because of it. My MO said he didn't believe it would work but would not stop me, and of course was amazed each week when I returned with my hair. Once they get something that's FDA approved and they can bill your insurance for it, everyone will get the caps. Okay, rant over. :)

    On a related note, I saw a preview for a new movie yesterday that stars Drew Barrymore and Toni Collette, who gets cancer. In the preview, they show her wearing a cold cap! I was so excited...until later in the preview where they show her with no hair. While I know the caps don't work 100% it's disappointing that this opportunity to really create awareness may have been missed. Of course, I only saw a glimpse so hopefully it plays out in a positive manner.

    For those coming up on radiation, I wanted to say that I had 33 rounds after I completed chemo, and it was a piece of cake. My skin never even got pink - my RO said 'looks like we haven't even treated the area', um which I guess is good news, but I told him that better not be the case! LOL. In any event, I think a lot of it was due to the advice I got prior to chemo to stay extremely hydrated inside and out - I drank a full gallon of spring water every day during treatment and slathered myself with organic coconut oil lotion day and night. During rads, I used all of the products they gave me - generic skin lotion during the day and Aquaphor at night. Hope this helps! Also, to keep me motivated during my rads days, I repurchased a scratch off lottery ticket for each day - I'm not really a gambler, but it was exciting to get home each day and see if I was a winner! In the end, I won enough to get a nice manicure. Good luck to you all!


  • hope49
    hope49 Member Posts: 239
    edited October 2015

    To all the cappers - when I was researching the caps, I was able to read every post in this thread, which even 3 years ago was a LOT! The things that were the most helpful for me at that time were the before/after pictures and the capping protocol/tips. As so many new cappers join, I'm wondering if it's a good idea for us to set up a new board for those researching and preparing to get started. We could post our pictures, and a few structured posts with the key topics for potential cappers, blogs/websites to check out, key contacts, etc. I think it would make it a lot easier for the newbies now that our thread has gotten so large.

    Then this page can be for the ongoing conversation and support as cappers go through the process, and then of course we have the 'post capping' board for follow up.

    Thoughts?

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited October 2015

    Hopeful, I noticed you went on hormone therapy as part of your treatment. Do you mind my asking what you're taking, and if you've noticed any hair loss or thinning since starting the meds?

  • hope49
    hope49 Member Posts: 239
    edited October 2015

    Hi Wildflower! I was on Tamoxifen for 2 years and am now on Aromasin. I haven't had side effects from either. Lately I have seen more shedding but it's mostly slowed down since I went back to using Osmotics. Nothing startling in terms of shedding - much less than when I was capping for sure!

  • marietherese
    marietherese Member Posts: 11
    edited October 2015

    hope49

    Thanks so much- It is a real shame that cold caps are not used more frequently and available to more people. People need to know that they do work!

    MT

  • tshire
    tshire Member Posts: 54
    edited October 2015

    What's Osmotics?

    I love the new thread idea! I'm on Day 13 and shedding but still nothing my fiance can see so so far so good!

  • aj93
    aj93 Member Posts: 37
    edited October 2015

    Good idea about the new board for new starters or those researching. While this board is a wealth of information, 400+ pages was a lot to read for me.


  • Angiel
    Angiel Member Posts: 175
    edited October 2015

    hope49, your post was just what I needed to read! I start rads on Monday - 33 rounds as well - and I'm scared. Thank you for the tips. I like the idea of adding a new board as well. It took me nearly 3 weeks to get through all of the pages when I was first diagnosed 10 months ago.

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited October 2015

    Wildflower 

    I've just started tamoxifen to and haven't shed any more than I already was if anything I'm shedding less my hot flushes seem worse though OMG!!! I really can't wait for 2015 to just be over its been a shit year and seems to only get worse I just received a email from my boys school a mum from my oldest sons class passed away suddenly last night she had a pre existing heart condition she was worked at the school with special needs children and even though we weren't close I have known her since Kindy it just shows you how short life can be and we should all do what makes us happy😥

  • starsarestars
    starsarestars Member Posts: 30
    edited October 2015

    Hi Ladies,

    I'm 2 weeks past chemo round 2, 4 more to go! Using PCC seems to be working. I've had shedding, but nothing I'd call extreme yet. I have lost a noticeable amount right above my ears on the hairline. I'm wondering if anyone has tips on how to get the caps to fit right there? I've also got the headbands but kind of feel like they don't make that big of a difference. Do you put the headbands over your ears? Seems like it would be too cold.

    SFMama I'm doing my chemo at UCSF, every 3rd Wednesday, maybe I'll see you there!

    Thanks for the info on the Biotin. My MO seemed to not care or not if I'm taking it, so I think I'll add it to the list of supplements I'm taking daily now. Hope it helps!

    Here's to staying positive through this craziness

  • Aussie-girl75
    Aussie-girl75 Member Posts: 95
    edited October 2015

    Wildflower

    I've started tamoxifen and haven't noticed any additional shedding if anything it has started to slow down but OMG these hot flushes tho they're driving me nuts!!!

  • Jbandkb1
    Jbandkb1 Member Posts: 55
    edited October 2015

    Hope49 thanks for the info on radiation. I was just told that my MO now wants to add radiation. Nervous about it since I'll have a mastectomy on 12/30 and I know it can cause complications with reconstruction. My mom had radiation with no issues either, but she had a lumpectomy prior so she didn't have to worry about reconstruction.

    Also like the idea of a new board. Capping has a lot of info and a place for people starting would be great.

  • dancetrancer
    dancetrancer Member Posts: 2,461
    edited October 2015

    Alright ladies, I started a success stories with photos thread.

    https://community.breastcancer.org/forum/6/topic/8...

    Let's try to keep it focused on that topic, if we can.

    We need another one with tips for newbies, like a FAQ about the cold caps process. If someone wants to start it that would be great. That's a bigger project. I don't have time for that right now.

  • hope49
    hope49 Member Posts: 239
    edited October 2015

    tshire, Osmotics is a line of products that has a hair care system to promote growth. I found it after researching what to use post cold capping to get things into shape. Had really good reviews, so I gave it a shot. I'm not sure how much impact the shampoo and conditioner have but the Follicle Nutrient Serum really seems to work well - both times I've used the regimen I've noticed new growth within a month that's an inch or so long. Hope this helps!

    dancetrancer, thanks so much for setting up the new forum - it would be great if our past cappers can post pictures and a brief recap of your story that can help newbies. Let's get on that one, cappers!

    I'm thinking the other board would be great to have all the protocols, tips, organizations (PCC, Elastogel, ChemoCaps, caps.org) that can be contacted for more info. Does anyone want to help with that one? I'm happy to assist...

  • hope49
    hope49 Member Posts: 239
    edited October 2015

    I just posted my story and pictures to the new board - who's going to be next???

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