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Cold Caps Users Past and Present, to Save Hair

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Comments

  • jodes001
    jodes001 Member Posts: 53
    edited December 2015

    Thanks for all the well wishes, you ladies are awesome!!!!!

    Smile


  • suladog
    suladog Member Posts: 837
    edited December 2015

    Jodes,

    Good luck tomorrow....I know you'll do great. My MO told me to take a couple of norco an hour before chemo to take care of any discomfort the caps might cause. I didn't really have any problems with them in fact the pre chemo drugs made me so sleepy I really was getting awakened every 1/2 hour by my husband to change the caps. Cold capping was sort of a snooze ;

  • sebm9
    sebm9 Member Posts: 488
    edited December 2015
    Hi all, I am a strong advocate of the Penguin Cold Caps over any of the Elasto-Gel brands. Penguin Cold Caps exist only under that name. The Penguin caps are filled with a special crylon gel that is designed to get and *stay* deeply cold much better and much longer than the Elasto-Gels, which thaw far too quickly (that's why many Elasto-Gel users adapt their protocol to change them much more frequently). The fit with Penguin caps is superior, making it easier to adapt to our varied head shapes and sizes. Yes, Penguin Cold Caps are more expensive, but the cost can be the difference between success and disappointment. I have no business interest in PCCs, but used them and continue to coach women in their use. And, credit where it's due: Frank Fronda, the inventor of PCCs, really figured out how to get cold cap therapy to work -- the specific cap design and the hair care protocol during and around chemo.

    Best,
    Susan
  • jodes001
    jodes001 Member Posts: 53
    edited December 2015

    Suladog- whats norco?

  • PatinMN
    PatinMN Member Posts: 784
    edited December 2015

    jodes - how did it go yesterday?

  • jodes001
    jodes001 Member Posts: 53
    edited December 2015

    Hey all,

    First I want to say that I WOULDN'T WANT TO DISCOURAGE ANYONE FROM TRYING PCC'S

    Unfortunately, my cold capping days are over....I only lasted through 3 cap changings. :( The whole process from the dry ice (driving 30+ miles on Sunday to purchase every week), to the transporting coolers, to getting the cap on tight enough was quite overwhelming for me. Then the pain, even with tylenol, was unbearable for me! When I literally started to cry...it was time to give up. I thought after 5 minutes or so, the pain would lessen, it did somewhat but the next cap started hurting all over. I do know that the temp of the caps wasn't quite cold enough...-25....but I figured it would be even more painful if it was at the right temp -36. I felt like a quitter, which I am not, but I have a great family supporting my decision.

    My daughter made a good point though, she said that if I hadn't tried the caps, I would always wish that I had.

    I did feel a great burden lifted when I decided to quit....I'll be ok without hair for a while...


    Sad

  • PatinMN
    PatinMN Member Posts: 784
    edited December 2015

    Jodes, I'm so sorry it was such a horrible experience for you! My understanding is that hair loss on weekly taxol (for non cold cappers) is sort of a slow motion thing. So probably several weeks will go by before any hair loss is noticeable. Best of luck to you with your treatments.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited December 2015

    ladies have you seen the news...Cold Caps have FDA approval! It looks like Chemo Cold Caps (who I use) will be on the forefront on the specific kind that have been approved. (Dignicap). This is huge!!!!

  • jc254
    jc254 Member Posts: 332
    edited December 2015

    That's exciting news about the FDA approval. It's interesting that the FDA release shows that the trial resulted in about 66% of women keeping at least 50% of their hair. I would like to see the breakdown of results by chemo type. We had several women on this thread who participated in the trial and the results were mixed. Penguin cold caps seem to get a better result. Of course the advantage with the DignaCap is that it's a self contained unit with no need for dry ice or special freezers. I wonder if Penguin will also seek FDA approval. Also hoping this is a first step in forcing insurance companies to cover cold capping.

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

    That's great news that there is FDA approval. It will take a long time to get through the insurance coverage process I bet. They will need to get a reimbursement code. That takes time, but it is a start. I am just happy that it may allow more women to learn about the caps so they can make a choice to save their hair and a have a little bit of "normal" when everything else is far from normal in their lives.

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

    jodes - so sorry you had such a difficult time with the caps! We have had a few who couldn't tolerate the cold, so you are not alone! I am so very glad you at least had a chance to try them and decide for yourself that it wasn't the right path for you. Now, you can make peace with your decision and move forward - you will be fine!

  • makingway
    makingway Member Posts: 465
    edited December 2015

    The FDA approval was for Dignicap only:

    http://abcnews.go.com/Health/fda-approves-cold-cap-reduces-hair-loss-cancer/story?id=35679667

    The company that provides Chemo cold caps use Elastogel caps.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited December 2015

    the owner of chemo cold caps is also the COO of Dignicap for the US. They will be the company that gets the dignicaps out everywhere. It's amazing news for breast cancer patients!

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

    That is wonderful news!

  • Mikie1956
    Mikie1956 Member Posts: 17
    edited December 2015

    I am just learning about cold caps.i was scheduled for my first chemo treatment today, but postponed a week so I could learn more. Any help or guidance would be appreciated. Quite anxious about this whole process.

  • cabland
    cabland Member Posts: 8
    edited December 2015

    Suzanne50 - my wife's last chemo was 09/30. A friend of hers came over a couple of weeks ago and they got some color from Sally Beauty supply and colored it here at home. She indicated it was cheap and much less caustic that regular hair color (i.e. no tingling/burning). It doesn't color nearly as well as her professional treatments and ultimately began washing out quikcly. She redid it again yesterday. She had a LOT of gray (I'm sure she appreciates me posting that) and given her hair is still so thin this REALLY helped the overall appearance in terms of "coverage". The texture of her hair and crazy mix of short and long strands gives her limited styling options and it never looks "great", but this was much better. Anyway, the "gentle" coloring seems to have been a decent compromise if you have a lot of gray. if not, I'm not sure I would bother.

  • Mikie1956
    Mikie1956 Member Posts: 17
    edited December 2015

    Hi again, does anyone have experience with chemo cold caps versus penguin cold caps? I only have about a week to handle this and feel that I am behind in learning all this...appreciate any help...

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

    Mikie - there are two threads that would be helpful for you to review, then come back here for further questions and support:

    CC thread for newbies:

    https://community.breastcancer.org/forum/6/topics/...


    Success stories with CC's:

    https://community.breastcancer.org/forum/6/topics/...


    Welcome!

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

    Mikie - welcome to our club :( Hang tight I am sure a few ladies may respond however a majority of us have used Penguin Cold Caps. There are some others on here that have used others though. From being involved on these boards the last several years, it appears there is more success with Penguin but others have had success with different caps too. Ask any other questions you have....these ladies are awesome and will share experiences.

  • jc254
    jc254 Member Posts: 332
    edited December 2015

    Mikie, here's my take on Penguin vs ElastoGels. Penguin has its own brand of caps that you rent directly from the company. All other cold cap services, including Chemo Cold Caps, use the ElastoGel brand of cold caps. You can also buy ElastoGels directly from Amazon. Penguin and Elasto Gels are different caps. I am biased towards Penguin since I had very good results using them. ElastoGels seem to have issues with fit for some women.

  • Mikie1956
    Mikie1956 Member Posts: 17
    edited December 2015

    Thanks - I am just starting the research. Was to start today with first round but postponed for 1 week to look at this.

  • LRFTexan
    LRFTexan Member Posts: 57
    edited December 2015

    I use chemo cold caps and just finished 4 rounds of AC with 98% of my hair. I think the most important thing is you are comfortable with who you choose to go with. I think if you are predisposed to lose your hair it's going to happen no matter which cap you use (my personal opinion only). I had a 60% success rate given to be of keeping at least 70% of my hair and have so far lost next to nothing. I have 12 low dose Taxol to go. Also, chemo cold caps will have the only access to the FDA approved caps so you might reach out to them and see if there's any hope of getting them at your cancer clinic. I'm sure demand will skyrocket but I'd certainly make the call if I was in your position. Any company you go with is a win for you. Good luck!

  • Mikie1956
    Mikie1956 Member Posts: 17
    edited December 2015

    Thank you so much for the information. I believe I will try this as if I don't I'll never know if it would be successful or not. I do not have the chemical listing with me right now - left it at home - so I'll talk with the MO later today and the Advocate at Kaiser here in Northern California to learn the best way to keep the caps cold during the treatment. the facility has the specific refrigerator - so that is good.

  • pch
    pch Member Posts: 185
    edited December 2015

    Mikie1956, My two cents: I've seen more success stories on this thread with Penguin Cold Caps than with Elastogels or any other helmet-type cap. with which many have had fit issues that affect the crown/top of the head. Most of the fit issues with PCC tend to be over the ear and at the nape of the neck, so much easier to camouflage. I had great success with PCCs and am not affiliated in any way other than as a past user. Good luck!

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited December 2015

    Thank you cabland for sharing your wife's experience. I don't have any grey. I have blond highlights that are growing out. Last color was June. But it isn't awful - just beyond my comfort zone. I think I will wait a bit longer. My colorist said she could use a gentler color on my roots. I would say my hair just stopped shedding a week or so ago so finally feel like I have turned a corner. Hopefully it will start to fill in quickly.

  • Wildflower2015
    Wildflower2015 Member Posts: 223
    edited December 2015

    Suzanne,

    Did your colorist mention the name of the gentler color she could use on your roots? My hair finally slowed down shedding about 2-3 weeks ago and seems back to normal. The hair that stuck around now has 4-5" of dark roots that is screaming for highlights. And that was just since June. Amazing how some of it still grew during chemo while shedding at the same time.

  • Suzanne50
    Suzanne50 Member Posts: 221
    edited December 2015

    Hi Wildflower - she didn't mention the name but I am going to stop by and see her....have her take a look at my hair again and see what she thinks. I will ask. I was also surprised that my hair grew during chemo. I have the same ....about 4" dark root. Yuck!

  • nancy3434
    nancy3434 Member Posts: 2
    edited December 2015

    hi there,

    I'm starting chemo on Dec 15th. Il be having AC for 4 cycles every two weeks then 4 or 12 cycles of Toxal. I'm going to be do the Peguin cold caps. Just wander how u did the your hair during the AC and if you had any advise? Thank so much

  • Angiel
    Angiel Member Posts: 175
    edited December 2015

    Welcome nancy3434. You will be doing the chemo regimen that I followed - I did AC with 12 Taxols. Anyway, I had very good success with the PCC. You can see my info on the success stories thread and you can also click on my name & read through my old posts from this thread which will give you some help on products, styling, hair loss etc. Mostly, I just twisted sections of my hair when wet to form curls when it air dried. I also wore it in loose braids a lot. Good luck & feel free to private message me if you have more questions after reviewing older posts. All the best. Angie

  • tshire
    tshire Member Posts: 54
    edited December 2015

    Just wanted to pop in and post another pic... this is me today, 1 week PFC!!

    image

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