Cold Caps Users Past and Present, to Save Hair
Comments
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Brax: I am also sorry to hear about the thinning. I rarely look at my hair so I don't have a clue as to what is going on with it. I must admit that it was a little disheartening to read some of the entries where ladies shed an awful lot PFC. I knew that shedding was a possibility but now it's beginning to sound like a certainty. I don't have thick hair to begin with so I must admit that I am afraid. Victorious: My eyes are definitely on you girl! I truly want to hear how you do PFC.0
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lbrewer, Someone asked this question several pages back. Most of us here used Penguin with much success. Arlene used Elastogel and said she had good results as well. The general consensus was go with Penguin, although more expensive,they have a better success rate. If you go with Elastogel, use the Penguin protocol.
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Brax, The caps don't need to be uncomfortable. The caps just don't fit that well above the ears. I lost a tiny patch above my ears after the first treatment, then ordered the gel bands. We only tightened the chin straps while adjusting the velcro. Once the cap was on, I loosened the chin strap until it was comfortable. I would just occasionally press the cap down on any place I felt it may not be touching properly. I never had them uncomfortably tight and kept all of my hair.
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Thank you. Even though I knew this could and probably would happen, I think I got a little spooked.
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Hey everybody, I can't find a place in Tampa Fl or Clearwater Fl that uses the cold caps. My MO scoffed at me. Surely there must be a place for me to use them. Anybody? My chemo is in one week!
Mimi80 -
Mimi8 have you contacted geralyn. She mAils the caps to you. You will need to use coolers and dry ice if you don't find and office that has a cooler
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My onc here in Orlando will let me use them. I am trying to convince him to let Rapunzal project donate a freezer so I dont' have to fuss wiht the coolers
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lbrewer, It was a hard sell, but my center accepted a freezer. PM me if you want to know any details or if you want the ph. number of my center, if your center has questions about it.0
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Mimi, Most of us cold cap users are a first at our respective centers. There are very few facilities that provide caps and a freezer.0
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Lbrewer, I used the Elasto-Gel cold caps. I ordered them from Ice Wraps website and they arrived within days, in time for me to chill all 6 caps before treatment started. I have 18 treatments of Taxol and kept my hair, so I'm an Elasto-Gel fan. I also liked that, with shipping and the exchange rate, they worked out to $100 a cap. They were far more affordable than renting the Penguin caps and I own my caps, so when the monster rears it head and needs some more chemo to beat it down, I've got my caps to use. My parents bought me a Coleman cooler - the Party Stacker - and a couple of ice packs. I kept the caps in my home freezer all week and transported them in the cooler every week. They stayed cold enough and worked. My onc was so excited every time he saw me and my hair. Being on medical leave, renting the Penguin caps was out of my reach ($600 a month! 6 months of chemo!).
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mimi, I'm in Canada but used the Elasto-Gel caps. I was the only patient using them but when I had my last round, there was another lady. And a lot of people got the information from me and the website info for Ice Wraps. If your onc doesn't say you can't use them, I say buy them and use them. And I didn't use dry ice, just regular cold packs in a regular cooler, and they worked just fine. 18 weekly treatments of Taxol and I had hair at the end of it. My hair only thinned a bit and that started after my Zoladex implant so I blame some of the thinning on the instant menopause. If you order the caps from Ice Wraps, you can get them in time to chill them in your freezer. They're in the US and it would probably take less time than it did to get them here to Canada.
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My wife's oncologist's office is skeptical---they had not seen much success with them---but said it would be OK for her to give it a try. The chemo starts on April 9. We got three Elasto-Gel caps and I'll probably be shuttling them between the dry ice in a cooler and "the room".
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Eric, Most of us have had the same experience. Apparently some used caps several years ago with little success. The caps have greatly improved and there is a very strict protocol, at least with Penguin. I hope you have enough caps, three will not allow much time to refreeze to the proper temperature.
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My cold cap temp is supposed to be - 30 degrees Celcius. My husband really reacted when he heard how cold they are going to be. How does your head NOT end up with frostbite, when you are wearing something so cold, for probably 8+ hours continuously?
I know that you aren't supposed to ice an injury for longer than 30 minutes: While exposure to cold can ease pain and swelling, ice packs can also stop blood flow if left on the skin too long, researchers say. Ice packs should not stay on the skin longer than a half-hour, and if the only cold compress available in the house is a bag of frozen vegetables, be sure to wrap it in a towel. If the injury occurs in an area with little fat or muscle beneath the skin, such as a toe, take the compress off after 10 minutes maximum.
I know of actual stories of people losing toes because they iced too long (couldn't feel it b/c they numbed the area). I know if it hurts or burns you are supposed to put a piece of gauze under that area to prevent frostbite...but when you can't feel it...how do you know damage isn't happening? I just don't get how you can keep an area of your body that cold for that long without causing damage. Can someone explain to me clinically why this is safe? (I know you all have survived and saved hair without frostbite, etc., and no long term injury...I just need to understand the "why" and "how" safety questions.)
I'm slated to start chemo Tuesday. Hubby and I will be practicing the caps this weekend. Obviously I'm having some last minute concerns!
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Dancetrancer,
That's a good question - and I don't have all the answers - I think you should talk to Geralyn - she usually answers emails after hours and over the weekend - although Easter weekend may be an exception.
I used the PCC - at the prescribed temperature - to my knowledge I suffered no frostbite - and I think I would know it if I had. I believe that havig the hair acts to somewhat insulate and diffuse the cold so that the skin doesn't have the direct contact that one would have if placing something this cold directly on bare skin - especially for such a long period. I would recommend that you mess up your part i.e. shuffle your hair around so that you have less exposed skin i.e. from the part - and keep mussing it a bit between cap changes. Your head will feel very strange for a few hours once you remove the last cap of the day - but each time the feeling seems to come back a little faster - or at least it did for me. If you have areas that are sore after the feeling comes back - that may be a red flag that you need to cover those areas with a little moleskin before starting next time. There are some women who have very thin hair to begin with - and I think those probably have more of an issue. My hair was quite thick when I started and I didn't really have any problems. The first minute or two of each new cap are excrutiating - but then you get accustomed to the cap and after that it's not so bad. I hope this helps. I understand your angst - I went through it as well - I think we all did. If you follow the protocol - you will keep your hair. It probably won't be as thick or as nice as the hair you have right now - at least not for several months PFC - but you will not look like you've been through chemo and you shouldn't come out of this any-where near bald. Good luck! Lucky
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dancetrancer, I just finished using the caps 7 weeks ago, and I had no frostbite. My caps went on at about -31. I made sure to change my part at each cap change. Like luckyjnj said above, the scalp will feel numb, but the feeling comes back pretty quickly.
I have 95%+ of my hair. I just got my hair cut for the first time PFC last week, and it's looking a lot better now, too. Less dry, more like "me". You'll be fine.
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dance, I too am a "how and why" person, but I don't have an answer for you. I can tell you that just as lucky mentioned, your hair really protects the scalp from the extreme cold. Likewise, the mole skin and panty liners protect your ears and forehead. You will know very quickly if you have missed a spot and the cap touches bare skin. It is also veryimportant to wipe the moisture off of the cap before placing on your head. We forgot once, and it hurt. One tip we learned along the way was to fasten the two front velcros before placing on my head, then readjust when the others are in place. Makes for a quicker cap change.
I remember the first treatment and the anxiety I had worrying about doing it all perfectly. It is quite hectic and nerve wracking those first few cap changes, but before long, it becomes routine. I really had good luck with the caps. Except for a tiny spot above my ears (that my hair covered anyway), I could not see that I lost any hair at all.
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Thanks all, I will email Geralyn and see if she can give me a "how and why" answer.
I have thin hair...so extra concerned!
I appreciate the reassurance very much!
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I have really thin hair as well, I had to put a piece of gauze on my part in later treatments..but no frost bite. The best advice I got was to make sure you change your part at each cap change and to wipe out the moisture.
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Lmflynn - did you have additional pain that warned you to put that gauze on your part? ie. how will I know if damage is being done, if I am numb?
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dancetrancer I also have very thin hair and have not had any problems with frostbite. Good luck Tuesday!0
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Hi not posted for a while as I've had very bad SE from 4th chemo. Having a wks break then back to first chemo for another two. My hair is nearly bald on top but have good shine on the rest of full body hair. I'm in two minds to carry on as I'm not sure how it will grow back with no hair on top. I look very strange and to b honest I hate to look at myself. My DH says carry on but I don't know?
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Ali
Sorry to hear about the SE and the bald spot - what is your chemo regimen? I can't help you with the decision to carry on or not - that's a tough one. I guess once the bald spot grows out you can blend it with the rest eaiser if you carry on.
Good luck - and take care, Lucky
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Hi I was on FEC then Taxotere so back to FEC. I am a bit worried how it would look growing back also I have two more so I might lose a lot more hair.
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Thank you so much brax!!! I'm curious - what degree are you told to cool at?
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Dancetrancer, I am several years out...your scalp is REALLY cold. It might hurt to the touch during the treatment, but there is no scalp freezer burn. I would be afraid that if you try to protect your part, you will get hair loss in those areas.
Leesa, I am sorry to hear it's not working as well as you hoped. Do hang in there, maybe you manage your hair while it grows back in full. I lost a good bit around my ears, and learned to use headbands to disguise it. I used ace bandages to keep the caps tight on my head. Probably the precursor to those bands Frank sells for $50 now, lol.
PortisK, I LOVE Peachtree Oncology. I did a clinical trial with them last year, and took them lots of Cold Cap Info. Anne, the research nurse was my main contact. If your daughter is still nauseous, maybe try a different nausea med? Zofran, emend..etc. I still don't know which came first, the chicken or the egg? Did the caps cause pain and nausea and headaches, or was it all the toxins being pumped into me, or was it the sheer stress of chemo day? Regardless, I survived it all and years later am still thrilled I was one of the first crew to use the caps in my area. The hospitals all call me now with nervous new patients. I love being able to talk to them.
I have said it on this thread many times....but I didn't pay any attention to what shampoo I used, and I foil highlighted my hair all through chemo. I am also a strict vegetarian. And I ended TCHx6 with a full head of hair. I did exercise A LOT. I sweated daily, did Bikram yoga, played lots of tennis, did kickboxing and drank lots of fluids. During my infusions, I had a constant warm cup of green tea that never seemed to empty thanks to my husband and mom. I made myself come home the night of EVERY chemo, and walk until I was in a full sweat.
Hang in there ladies!! It is So worth it. Hugs to you this week Dancetrancer. PM if you have any last minute questions!0 -
geewhiz, thank you so much! I really, really needed that pep talk!!!
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dancetrancer I was told -30, and that is the temp I used during my first treatment. After reading more on this thread I wondered if I should be doing the thick hair treatment because although I have fine hair, I have a lot of it. The second treatment I switched to the thick hair regimen which is -32 and an extra cap before starting chemo. Like the others have said, the first cap is the hardest but it does get easier. I forgot to bring ativan and tylenol with me the first time. The nurse gave me the meds in pill form, but it was too late to help me. The second time I remembered them and took an hour before my infusion, which helped. I take it after my blood work. My blood work, onc appt. and infusion are all on the same day.
geewhiz Ace bandages...Brilliant! Thanks.
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The one layer of thin gauze was recommended by Frank...so I felt comfortable doing it and had no baldness....he recommended it after TX #1...due to scalp redness... My helpers would put it on if they saw really red part ... Like I mentioned we changed my part too so only used toward end of each day....I bought J&J 2x2s - and opened it up to one layer...
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Ali: I say carry on. The cold will help it grow back so much quicker. So sorry it hasn't worked 100% for you. Good luck!
Happy Easter everyone!!!
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