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Cold Caps Users Past and Present, to Save Hair

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Comments

  • MamaFelice
    MamaFelice Member Posts: 165
    edited February 2018

    Hi ladies!

    Pbello I am sooo happy your capping experience went so much better the 2nd time!! Ativan and an ibuprofen did the trick for me too!! Hope you are feeling good and tolerating your treatment well!

    I'm almost 1 month PFC! It is hard to believe! I went to the SOBE Wine & Food festival this past weekend to celebrate! What a blast! This pic was from a Friday night event. Wearing fake lashes and my eyebrows are almost completely drawn in, but it felt so nice having hair! I'm still shedding....last week I had my final post treatment big shed, and it has been tapering off since. No sign of regrowth anywhere yet-- head, legs, arm pits or hoo hoo. Just plugging along! So happy to see you all doing well! Keep capping and sharing your experiences! 😃🦋☀️


    image

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    You look great Mamafelice! Just wondering if you don't see the pm's I sent you....



  • itsstillme
    itsstillme Member Posts: 48
    edited February 2018

    mamafelice you look so happy! Glad you had a great time at Sobe. I’m having BMX surgery this morning. Pray for me!

  • Pbello
    Pbello Member Posts: 83
    edited February 2018

    mamafelice - you look beautiful! And so happy!!! Congrats! :):):) hope you enjoyed the WFF.

  • magari
    magari Member Posts: 335
    edited February 2018

    Good morning, all!

    MamaFelice - You look great and I'm so glad you were able to get out and enjoy the festival. Red wine is pretty much my favorite thing and it has been tasting like acid throughout chemo. I am hoping that will stop PFC so that I can once again enjoy a glass or two.

    ItsStillMe - Sending you good wishes for your surgery. My own was actually not that difficult. Please check back in to let us know how you're doing when you are able.

    Will be calling my dentist this morning to make an appointment to get my sensitive tooth looked at. Hopefully it won't be anything serious, because my MO's office said they might have to push out my final chemo date if it involves any instruments that would cause bleeding. And I really want to just complete that last session and move forward!

  • Jlove1821
    Jlove1821 Member Posts: 53
    edited February 2018

    can anyone tell me what their big sheds looked like? I'm almost to day 14 and I'm getting anxious about what it could be like!

  • Shlomit
    Shlomit Member Posts: 68
    edited February 2018

    Mine started in earnest on day 19 after my first treatment (2/14) and has been continuing since with only minimal slowing. If I can get it to attach, this is what was in my comb the morning of day 23, and 2 days after treatment #2:

    image

  • Pamela23
    Pamela23 Member Posts: 394
    edited February 2018

    Rockcity--I just had one patch at my crown and broke it up, then shampooed as usual. I was using Johnson's Baby shampoo--which was originally recommended but then 1/2 way through someone said it wasn't sulfate free. But it was clear and gentle and I felt that helped keep residual from forming like some of the opaque ones the other girls were using. Not sure if that helps!

    MamaFelice--you look amazing!!

    JLove--the "big shed" happens around 19-21 days after infusion. For me, I washed my hair and when started combing gently through with my wide tooth comb, I got a couple combfuls of hair while combing out. It wasn't horrible, but definitely alarming because I could put my fingers through my hair and get about 20 hairs in my hand. I don't know about anyone else's experience but it seemed worse the first time and after that it was more consistent than abundant. You start finding hairs in the sink, when you sweep, on your clothes, etc. I saw bald patches underneath after the 2nd infusion. Again, gradual but persistent loss.

  • Amelia01
    Amelia01 Member Posts: 178
    edited February 2018

    Magari - I hope nothing is serious with your tooth. I had a raging tooth infection between rounds 2 and 3 and it caused a fever and I was even hospitalized (and on two kinds of antibiotics). Once clear of the fever I went to the dentist (MO approved even a root canal if necessary), dentist poked prodded and cleaned up and in a few days the pain went away. A couple days later while flossing, a little piece of plastic came out of my gum line - it seemed to be a bristle from my toothbrush that caused all that mess! Bascially, what would be a normal situation in most people becomes exacerbated in us because of our compromised immune system.

    JLove - my first big shed was combfulls of hairs (with light combing). It has never really tapered off because any pass of the comb I get hair and I constantly find hair around the house, on my clothes in the kitchen (eiiieewww). I've lost at least 60% and I have round 4 on Monday of EC.

    Pbello - glad you found a prevention for the capping nausea. I've always reached for the xanax prior to any infusion but next time I'll take more! I'm also wondering about the taxol portion of the treatment and hoping it is more forgiving than the EC/AC. If I get nauseous though, I might throw in the towel. 12 weekly with the caps ---- ugggghghhghghg I dread even considering it!

    Any suggestions of how to handle the bald spot during capping? Should I put gauze on my head to protect it from frostbite?

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    Hi all - I had my first Paxman scalp cooling experience on Monday. All went pretty well - the paxman was pretty cold the first 5-10 minutes, but then I acclimated. I was lucky - no headache, and didn't really feel cold (of course the infusion chair was heated, so that helped! Carefully washed my hair this morning. Now I'll just have to wait for the big shed :) My next chemo is in three weeks, so I assume it will be right around then.

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    Hi all - I had my first Paxman scalp cooling experience on Monday. All went pretty well - the paxman was pretty cold the first 5-10 minutes, but then I acclimated. I was lucky - no headache, and didn't really feel cold (of course the infusion chair was heated, so that helped! Carefully washed my hair this morning. Now I'll just have to wait for the big shed :) My next chemo is in three weeks, so I assume it will be right around then.

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    Hi all - I had my first Paxman scalp cooling experience on Monday. All went pretty well - the paxman was pretty cold the first 5-10 minutes, but then I acclimated. I was lucky - no headache, and didn't really feel cold (of course the infusion chair was heated, so that helped! Carefully washed my hair this morning. Now I'll just have to wait for the big shed :) My next chemo is in three weeks, so I assume it will be right around then.

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    Hi all - I had my first Paxman scalp cooling experience on Monday. All went pretty well - the paxman was pretty cold the first 5-10 minutes, but then I acclimated. I was lucky - no headache, and didn't really feel cold (of course the infusion chair was heated, so that helped! Carefully washed my hair this morning. Now I'll just have to wait for the big shed :) My next chemo is in three weeks, so I assume it will be right around then.

  • red332
    red332 Member Posts: 47
    edited February 2018

    It'sstillme--how did surgery go? Are they going to let you go home today?

  • red332
    red332 Member Posts: 47
    edited February 2018

    It'sstillme--how did surgery go? Are they going to let you go home today?

  • shortney36
    shortney36 Member Posts: 7
    edited February 2018

    I wanted to give people an update, especially those that are trying to do the dreaded ACT cold capping. I have had 3 AC treatments with 1 more to go, followed by 4 DD Taxol. I started with past my shoulder thick wavy hair.

    I don't know if it is the regime, but I started my heavy shed a week after my second AC and it has not let up. I washed my hair for the first time in a week (chemo was 2/22) and this was one of the worst days. My hair matted, came out in the largest clumps and I am beginning to see my part widen in what looks like will be a bald spot.

    I sleep on a satin pillowcase, wide comb once a day, use alterna caviar moisture shampoo and conditioner and Kenra leave in conditioner, neutral water, etc...

    I don't know what to do to be more successful?

    I am going to continue w/cold capping, because if I do need to wear a wig and something a thome, not to look like Gollum, I hope to be 6 months ahead of bald.





  • ILoveFlowers-Shelley
    ILoveFlowers-Shelley Member Posts: 2
    edited February 2018

    Hi everyone! I am trying to decide whether or not to do cold capping. I feel that I want to try it and I have a friend who is willing to help me at the chemo treatments. Is there an easy way to find out the different brands that people have used with the costs and their success stories? I was supposed to start chemo tomorrow but I am trying to postpone it until after I pick which cold cap to use. Also, has anyone had success with getting insurance companies to pay for it? Thank you for any help!!

  • cali58
    cali58 Member Posts: 92
    edited March 2018

    Hello everyone! I am an alumni, 9 months PFC/Taxotere-Cytoxan. I would like to encourage all of you to continue cold capping and congratulate those of you that have finished chemo and are looking great, or maybe not so good YET! Your hair will grow back faster than if you hadn't cold capped. I used Penguin Cold Caps and paid a PCC technician $350 every time I cold capped, plus new caps rental. I was expecting to keep a good amount of hair, but I didn't. I only kept about 20%. In my opinion, the brand of cold caps you use doesn't make any difference. I got nauseous as soon as I sat on the infusion chair during my last chemo. The whole processwas a nightmare!!! I lost so much hair after my first infusion, that my MO suggested that I stopped cold capping. I kept losing huge amounts of hair through chemo, but I refused to stop cold capping. Keep going! It's worthwhile. Good luck everybody!!! I will be posting pictures soon.

  • cali58
    cali58 Member Posts: 92
    edited March 2018

    Before chemo

    image


    PFC - May 2017

    image

    3 months PFC - August 2017. I kept shedding quite a bit for more than 3 months PFC

    image

    9 months PFC - February 2018. The bottom of hair is fluffy, but “thin". I don't have as much hair as the picture shows. The top is growing fast and very full. I have cut the ends several times.

    image

    image

    My tiny pony tail (better than no pony tail)

    image

    I have been wearing a wig during the winter, so I don't mind my gray hair for now. I have a hair coloring appointment on April 17, eleven months PFC. I found a hair stylist that uses Oway HNectar. It's an Italian hair coloring that doesn't have all the bad ingredients.


  • tld2017
    tld2017 Member Posts: 147
    edited February 2018

    Wow, glad I found this discussion on cold caps! :) I just ordered Penguin cold caps today! It was a nerve-wracking decision to make because I don't know if I can handle the coldness of it all, but I knew I would be disappointed in myself if I did not at least try it. If I can't do it, Penguin assured me that I can return it and only be out the cost of the first month.

    Cali58, your hair looks great! I pray that I can save as much hair as you did!

    Iloveflowr, the cold caps that I researched were Dignicap, Paxman, Penguin, and Arctic. Dignicap and Paxman are not available in my area so they were knocked out pretty quickly. It was a tough decision between Penguin and Arctic but I decided to go with Penguin because they have a much longer track record of success. Penguin is more expensive than Arctic by about $120 (approx.) a month, which was obviously a downside. But it is what it is and I am really hopeful!

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    Hi- just had round 2 yesterday and did not get sick from the capping. Took 2 Tylenol and an Ativan beforehand this time. Also ate a modest breakfast and didn’t go overboard on fluids right before starting the caps. Still felt a bit nauseated every cap change but I got through it well enough to continue for next round. Waiting for the big shed. I’m on day 23 so I know it’s due.

    Pam- I was using it’s a 10 keratin shampoo. Sulfate and paraben free but it is opaque. I’m going to try acure clarifying next wash and maybe an apple cider vinegar rinse. Hopefully this will remedy without more extreme measures. I’ll know soon. My hair feels dry but the scalp is gross.

    Amelia - try Tylenol or Motrin with the Ativan if you don’t currently use them before capping. You might want guaze on the bald spot. That could hurt otherwise. If you don’t have to change caps it should stay in place. If you do I’m not sure how u could keep the gauze from shifting.

    Cali58- 80 percent of your hair is amazing!

    Iloveflowers- the rapunzel project website can direct you to recommended coldcapping companies and give you helpful tips. Changing the caps is a lot of work( for my trooper husband). If you are near a site that has a coldcap system, it seems to be a lot easier to do. None of the options are cheap

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    cali58- your hair sure is growing in beautifully. Have you considered sharing those pics on the cold cap success stories photos thread? I know I looked through that entire thread to help me decide whether or not to coldcap. Your pics would be a benefit to others.😁

    MamaFelice- you look great. What a way to celebrate! You are always such an inspiration

  • cali58
    cali58 Member Posts: 92
    edited February 2018

    tld2017 - Good luck to you! No matter how bad or “freezing” it is, it will be over in no time. Take some pain medication before cold capping. Dress warm and take a neck pillow, ugg boots and electric blanket. Use panty liners to protect your face and ears that will be in contact with the frozen cold cap. It will burn your skin if you don’t protect it. Use hexane free/cold pressed castor oil on your lashes and brows morning and night (mine got thin, but never lost them all.) Try not to wash your hair often. Wait as long as you possibly can during washes. My major sheds were when I washed. Do wash your hair on the specific days advised by PCC.

  • klvans
    klvans Member Posts: 199
    edited February 2018

    Shortney One thing that helped me was patiently combing out the mats using a spray designed to put shine in your hair. Garnier Fructis makes an inexpensive one called Sleek & Shine Brilliante Shine Glossing Serum. Sprayed on dry hair it allows you to get the mats out better than anything else I tried. I've used others and they all work pretty well. As you may have discovered wetting or washing already matted hair makes it worse. I also found that if I kneaded the cap regularly during the time it was placed on my head I got a better result. Best wishes to you.

  • cali58
    cali58 Member Posts: 92
    edited February 2018

    Rockcity - Thank you! I kept only 20% of my hair. I posted my pictures under “cold cap before and after photos”. This is the most accurate forum, as it contains the good and the bad results. Here is a pic of my tiny pony tail:

    image

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2018

    ILoveFlowers - if you don't have the "machine" versions of cold caps (Paxman, Dignicap) available in your area, your choices are either renting Penguin caps or using one of the services (Arctic, Chemo cold caps, probably a few others) that use Elastogel caps. The elastogel caps are one piece, and don't hold the cold temperatures as long as Penguin (requiring more frequent cap changes). Penguin caps are sort of articulated - you can fit it to your head size. The most important thing in saving as much hair as possible is to get a good fit, so that the cap makes good contact with your scalp. Then of course different chemo regimens are easier or harder on the hair. But two people with the same chemo regimen, same caps, same timing, etc. can have vastly different results - noone can yet explain that... Regarding insurance coverage, it's not common for anyone to have success with that. As someone mentioned earlier, the Rapunzel Project website has great information. Good luck!

  • rockcity
    rockcity Member Posts: 155
    edited February 2018

    cali58- I didn't realize that you LOST 80 percent of your hair. That is more than any of us are hoping for. Your regrowth looks great, though

  • CathyBook
    CathyBook Member Posts: 14
    edited February 2018

    FYI, regarding insurance - when I was at my chemo on Monday, the woman in the next chair was also using Paxman. Her husband was telling me that they had submitted their invoice from Paxman (probably around $2000 total) to their insurance provider. With Paxman, you pay $500 for the cap, and then 150 - 200 each time you have a treatment. So far they've gotten about a third of the cap cost back, and think they'll be getting some portion of the per-treatment cost back also. Their insurance company is Anthem. So, looks like it might be worth a try. I'm certainly going to follow up with my insurance and see. Maybe this is moving in a positive direction!!

  • yvonnasf
    yvonnasf Member Posts: 4
    edited March 2018

    Hello,

    I did research about penguin cold cap. On the beginning seems like perfect idea but now , im just curious, it is so expensive plus a lot of work during chemo , with changing the cap, so i just dont really know what to do

  • yvonnasf
    yvonnasf Member Posts: 4
    edited March 2018

    hi

    i did order also penguin, im just curious how it will be because it is expensive and "to much headache" with it changing it.

    I heard today i can not do it myself, someone have to do it for me ;-(

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