Cold Caps Users Past and Present, to Save Hair
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You too Arlene!! I love your avatar! May the force be with us all!! ( Oh geez, I hope that is a light sabre I see!!)
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Hello, I'm new to site but I'm desperate for some information. At 25 I have already undergone a bilateral mastectomy and am due to start chemo in 3 weeks. I'm terrified!! I heard about the cold caps but haven't been able to find exactly where to buy them, what to expect, or how to use them. Help please...
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Okay, I'm going to have to chime in here...I see brax has mentioned that her cap temperature was -30.0° Celisus and she changed to the 'thick hair regimen' of -32° Celsius for the 2nd treatment. And, dancetrancer's cap temperature was suggested to be at -30° Celsius. As a Penguin cold cap 'Engineer'
I have helped many women with using the Penguin cold caps. I feel qualified to share with you something I have shared with Frank himself. There is NO way to have the entire cap at one temperature. In fact, for each section you will find a 'range' of temperatures. Use a cap anywhere in the range of -28.0° to -32.0° Celsius-no lower and no higher. Think about it this way-When the caps come off after 1/2 an hour of wearing them they are not at the same temperature as when you put them on...If you have very thin hair, there is likely more skin exposed at the part of your hair. I only use gauze if the part gets very red. You can use an unfolded piece of gauze-they have plenty of them at the infusion center. Unfold it so it's @ 6" long and double it over twice, so that it is @ 1/2" X 6". Be sure to wipe the frost off the cap before placing it on the head.@dancetrancer-'While exposure to cold can ease pain and swelling, ice packs can also stop blood flow if left on the skin too long'. That's the whole concept-to restrict the blood flow/chemo from reaching the hair follicles! Using ice packs aren't the same as using the caps. Ice packs have a tendency to 'stick' to the skin. The cap isn't in direct contact with the skin. Your hair is a barrier. I hope this explanation was helpful, and understandable...lol
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TygaB-Call 810-359-5257 to order the caps. You can read about them on the Penguin cold cap website at http://www.msc-worldwide.com/indexusa.html
There is a contact link with a form on the website to complete.
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TygaB: Please google penguin cold caps; the caps are rented for the duration of your course of chemo. Please also send me your email address and I'll send you my very comprehensive writeup of how to use them, my experience, and other care tips for getting through chemo.
You are not alone!
Susan
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dancetrancer: My temp was -35C. The penguin caps are designed so that they maintain a temp just above frostbite (the patented gel inside the cap is the trick). Believe it or not, your head gives off a tremendous amount of heat and even at -35C the caps need to be changed every 30 minutes. In fact, there were many times when I could swear the cap wasn't cold enough. My helper took the temp of many parts of the cap before/after, and it was cold enough. He also took the temp of my head. I never suffered any frostbite, etc.
If you ever have a "burning" sensation when you put the cap on, take the cap off and put a small piece of gauze covering the spot. I had one friend who had that sensation in her part area where her hair was especially thin. She had a bald patch about the size of a nickel for about a month but it quickly grew in, as cold stimulates hair growth.
When you first put the first cap on, the feeling is a brain freeze like drinking a slurpee too fast. After about 5 minutes, you have frozen the nerve endings and you'll have a general sensation of cold but not that same freeze. I found that the cold sensation increased throughout the day and I'd have the shivers. An electric blanket and some hot tea or cocoa are great friends! (I actually drank very cold things, and sucked ice, to prevent mouth sores, though.)
Hope this helps!
Susan
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To everybody having PFC shedding: I had lots of shedding, for many months PFC. I was surprised by it, because I somehow expected it to stop about 3 weeks PFC. (I guess I was mentally tuned to a 3-week cycle of chemo SEs each infusion.) I have lots of hair, and on any given day I shed 20-30 hairs while washing hair etc. I collected my hair in a baggie, and even though it felt like I lost a ton, it ended up not being as much as I'd have imagined. Most of the loss was at the nape of my neck, and overall loss. In photos it looks normal but with a little less body.
I was pretty concerned it would all fall out, and then one day it just stopped. I am a carnivore, btw, and used PCCs before it was known that iron supplements can help cease the shedding. Please check into taking iron supplements, if you haven't. (Anybody know if there is a recommended dose?)
Susan
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brax...I don't have Ativan prescribed and didn't clear Tylenol w/my doc. I really don't want to take Ativan if I don't have to. Is this really that painful that I need these meds? I am trying to limit extra drugs in my system, if at all possible...but if it's necessary....
lmflynn, thank you for those details! BTW, Geralyn did email me back - I'll talk with her tomorrow to go over my last minute questions.
makingway, I understand that is the whole concept, but too much of a good thing could be an issue - that's what I'm worried about. I did find a few websites where women posted about getting blisters from the cold caps and then losing their hair in that area when the blister turned into a black scab then peeled off later. So I know it does happen - so of course I'm trying to be proactive and learn how to know when to use a higher temperature or gauze. It seems like what people are telling me is if the part or any area gets super duper red to proceed with caution. thank you for the details on the range of temps - Geralyn had told me it varies so just be sure to read it in the center, the thickest part. Thanks for the details on the gauze, too!!! Sure do wish you could be here with me Tuesday to help my other newbie cold cap engineer!
sebm9 - thanks for the details on how the caps are patented to prevent frostbite. I'd love to know exactly how that works. That's pretty interesting to take the temp of your head...I'll have to do that for curiousity sake (and also, that would indeed help provide a technical input of what temp the scalp is actually cooling to and should be interesting to monitor and correlate with the degree of redness). Really redefines the term "hot head". LOL Oh, I am entertaining myself this morning.
Glad to hear that your friend's bald spot from apparent frostbite quickly grew back! I really appreciate the feedback on the burning sensation being a warning sign. I was worried that once you are numb you won't have proper feedback to know if damage is being done by too much coldness. Thanks!!! Oh and I've got my electric blanket ready!
Regarding shedding, I would say I already shed a lot, on a normal basis. I shed probably 8 to 10 hairs or more on a daily basis...always cleaning up hair in my bathroom. Grrr!!! This is despite using a large tooth comb and carefully holding the hair to protect the roots while combing from the bottom up. My hair is fragile and breaks easily, so I have always had to baby it. Sooooo....I could be a challenging case for the cold caps to try to protect. We'll see!
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Makingway is right about the temp variances. I am the local hospitals' cap goto gal as well, so lots of experience with these buggers now.
To minimize the variances, we learned to knead the cap in sections. The side flaps warm quicker than the main section. We learned that kneading them in order yielded minimal variance. We took them out too cold all over intentionally, then kneaded it to temp. So once a cap went on my head...my cap engineer husband would rest a few minutes, then start kneading the next cap. He got thick gloves because his hands were raw by the end of the day. When helping other ladies who dont have a partner or just need a first time helper, I use leather gloves. I also use moleskin on ears and forehead to keep the sting down.
Dance, I didnt ever take ativan. Nor did I ever feel I wanted it. But, I did take an advil that evening. It helped tremendously.0 -
Thanks so much for the extra details geewhiz! I will ask my onc what pain killer I'm allowed to take if needed.
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dancetrancer Ativan was prescribed as part of my premeds. My onc gave me a script as well because it helps with nausea and sleep (if needed). I was glad to get the script after seeing so many people had used it before the cold caps. I just forgot to take it with me the first day. My onc nurse offered the tylenol before my premeds and I accepted it. For me, there was a big difference between treatment 1 with nothing before first cap and treatment 2 taking the ativan about forty-five minutes before. With or without the med, I think it just gets easier after the first cap. Good luck Tuesday, I will be following you later this week.0
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Thanks brax! I'll talk to my nurse about it as soon as we arrive.
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when you have rads has anyone lost any hair?
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No, there is no loss of hair with rads. (except for maybe under the arm if rads done there? Not sure of that b/c I did not have axilla rads, just whole breast)
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dance, I took 1 Alieve on the way to treatment. The caps were uncomfortable for the first few minutes, then felt fine.
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Ali, I never lost any hair with rads.
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Hi Ali: No hair loss from rads except the hair the rads touchs....
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Hi Everyone,
Tomorrow will be one month PFC for me. Still a little shedding but not as much as it had been. All in all I would say I lost about 30% of my hair. I am going to try and get a trim next week as the ends are so scraggly. It's thin all over but because my hair is layered, the ends were already a little thinner and I am wearing it up all the time now to hide that. I also ordered Pallette by Nature hair color and can't wait to get rid of the grays!
I see several of you have already had rads. I have gone 4 times so far but really don't have good feelings about it. I've been told how it further decreases the chances of recurrence, but I'm worried about all the bad side effects. There is just so much we still need to learn about cancer.
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Well, DH and I are practing the caps. Getting better as we go. DH just said he must not have gotten the chin strap right. I said "Why?" DH "because you can still talk!"
LOL!!!! The steroids are making me a crazy nonstop talking maniac. Tomorrow is gonna be interesting! At least I'm still laughing!
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Best wishes tomorrow Dance. It goes pretty smooth and easy. You'll do fine. If you haven't, ask them for Ativan in your premeds...it helps a lot!
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Goodness...I should have read back a bit about the Ativan Dance. You'll probably be fine without it. The dose is so small that it didn't put me to sleep and I never take anything but I was pretty darn nervous the first time and it really helped and it helped my scalp not feel the freeze. You'll probably be one of those who deals great with it all. Again, best wishes tomorrow. We'll be thinking of you. If your center has wifi, you can post while having your treatment.
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Ive tried with and without Ativan. And Ativan definitely helps me not feel the pain. The chin strap was uncomfortably tight my first few times but now my husband has it down where the cap is tight enough on top but the chin strap is "nearly" loose. I can eat, drink, tal comfortably.
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thanks Arlene! they said they have wifi, but it is "sketchy" reception. So I'm not counting on it. that's a bummer, especially for the followup days when I will get my Herceptin and expect to be bored. Oh well, I've got movies prepped to watch on my computer, so that will help considerably.
I haven't ruled out Ativan...waiting to see how wired I am tomorrow! I'm glad you all mentioned it, so I have it as an idea in my back pocket if needed.
I put a handerchief under my chinstrap during practice tonight and that helped CONSIDERABLY.
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Hi all! I survived my first treatment today with flying colors - NO allergic reactions!!! I'll have my Herceptin tomorrow. Onc is doing my first treatments very slow since I have had lots of recent allergic reactions.
The 1st two cold caps were pretty cold, but after that - NO problem! I mean, the first two or 3 minutes were cold of each cap, but then it went away. My part did get really cold mid-day, so we switched it, and then one area in the bangs got too cold, so we temporarily added thin gauze. I hope we got the caps tight enough and that they were cold enough near the end of my 4 hours (I had the caps on a total of 12 hours b/c of the length of my initial tx). All I know is we did the best we could!
I think keeping my core warm with the electric blanket was key. I also had one of those ski neck warmers, which was GREAT. The ice on the nails, though...ouch-a-roo!!! No hair to buffer the cold there! So I just took breaks. Couldn't risk frostbite. My Tax time was I think about an hour so with 15 min before and after, that would be 1.5 hours of toes/fingers in ice. Way, way too long for me to tolerate (or be safe!).
In addition, I put a folded bandana between the chin strap and my skin. That really helped me tolerate the coldness of the straps upon initial application, and limit the amount the strap cut in before we were able to loosen it.
All in all, a very successful day, but I'm exhausted!
Oh, and my onc came in and said "you know, your hair will grow back", with sad little eyes as he looked at me in my cap. LOL. He really does care about me, he just has no faith in this. I told him, I know, except for like 5% of women who have permanent hair loss. He just sort of shrugged his shoulders and tilted his head and walked away. I sure do hope we had these on tight and right today...would love to make a believer out of him. Oh, and all the nurses and front desk staff had to come back to see me in my full garb. They were VERY excited about it. I wonder if being female makes you more empathetic/excited about thinking it may work.
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Dance, 12 hours! Whew, long day for you. I remember that feeling during the first treatment, wanting it to work so badly, wanting to prove the nay-sayers wrong. It will be a great feeling for you, when you arrive for your second treatment WITH HAIR 0
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Oh Laura, I so hope so!!!!
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geewhiz: Yes, absolutely, when using the dry ice method the caps should be kneaded as part of the prep. This kept my helper very, very busy (and he is an especially meticulous and scientific helper). He would get the caps out about 1/2 hour before changing and begin taking temps, and then knead the coldest parts with his gloved hands to get them to proper temp. He took temps of all sections of the cap and had them within 1 degree when they went on my head. Of course, various parts of the head are warmer than others, but the temps Frank suggests are within the window for success for most folks. Since Frank can't individually analyze our hair himself, he depends on us being able to accurately describe whether it is thick, thin, fine, etc. (Mine was easy: thick and curly, and 2 years post chemo, even more so!).
It's also important to knead the caps once they are on your head. First within the first minute or so that it is strapped on. This is because as your head heat melts the cap gel, the gel softens and kneading it can make it form to your personal head shape. Knead it again in another 5-10 minutes. Actually, I knead mine continuously throughout -- kept pressing it down to make sure it had maximum contact. Believe it or not, there were many times when my nerve endings were so numb, I couldn't even tell that my head was cold! I kept telling my helper it wasn't working, but he'd take the temp of the exterior of the cap (which even after 30 minutes would read -30C) and assure me it was plenty cold... I was one of the early users and there were very few women with whom to compare notes back then. So glad this list is so large and healthy! Such a blessing.
Best,
Susan
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dancetrancer: Congratulations! You are now a PCC pro. The first one is the most challenging and exhausting, but now that you know how it works, it will be fun to go back for your infusions with a full head of hair and continuously surprpise, shock, and make believers out of your nurses and doctors. Every single week, my MO (a woman) told me I was doing great but that my "hair will fall out this week." I don't blame her -- in decades of being a fantastic doctor, she'd never seen anything else, and it was her job to prepare me for that SE. I took such pleasure in showing her this new technique which works! And, now, all of my doctors and nurses (even my not-oncological doctors, like even my dentist!) recommend PCCs to their patients.
Hydrate hydrate hydrate, and get some walking or exercise in the next few days as you feel up to it, to detox all of that chemo as quickly as possible. Detoxing will minimize any of the SEs you might feel, and keep you strong and keep your red blood cells nice and strong too.
Susan
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dancetrancer-I'm glad it went well for you
You can always double-up on the moleskin for the fiorehead if needed. Next time will be even easier! 0 -
Congrats Dancetrancer on surviving your first infusion with cold caps!!!
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