Cold Caps Users Past and Present, to Save Hair
Comments
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luckyjnj: I have only undergone one chemo so it is too soon for me to see shedding or anything. I'm only 13 days post TCH #1. I have my fingers crossed that all will be will.
lbrewer: My 1st MO said that I could not use cold caps. I immediately left him and went to another that I KNEW would. There is a standard treatment that most M.O.s follow so having treatment under another MO was not an issue for me.
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I used cold caps but not Penguin. I live in Canada and the price was prohibitively expensive. I ordered 6 Elasto-Gel cranial ice helmets from IceWraps in the US. The caps were $88.00 each and with shipping and exchange worked out to $100 each...far better than a 600 pound deposit and 500 pounds per month. I'm on long-term disability and couldn't afford thousands of dollars. The caps were here in a matter of days, I put them in individual freezer bags in my home freezer and then packed them in a Coleman cooler (the "Party Stacker" oddly enough) with two cold packs. So with the cooler, ice helmets and cold packs, I had to spend less than $700.00. After being in the freezer for the entire week, they were sufficiently cold. I put the first cap on as soon as my i.v. was started and my parents helped me change them every 25 to 35 minutes. I left the last cap on during my flush and....the beautiful wigs I bought never saw the light of day. I had 18 treatments, weekly, and should have been completely bald by week three, but my oncologist was excited to see me each month and see that the caps worked. I did have some thinning but that was in part due to the Zoladex implant that shut down my ovaries and estrogen. I was the only patient wearing them until the last few treatments when another lady began her first treatment wearing one. My nurse asked me to meet her and show her my hair. I hope that they worked for her as well. I saw posts where people thought it would take more time to use the caps. Since you're putting them on, and wearing them during your treatments, they don't take any extra time and do help distract you quite a bit. You're so focused on timing your cap change that time flies by. The link for the ice helmets is: http://www.icewraps.net/cranial-ice-therapy-helmet-by-elasto-gel.html. I will admit that they aren't exactly stylish but having my own hair really helped - especially once my lashes and brows disappeared on me. A nice bonus is that I can use them for my migraines. I planned to donate them but since I'm a stage IV metastatic, I think I have to keep them in case I need more chemo in the future.
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Laura5, I didn't have to use dry ice or a facility freezer. An ordinary cooler with cold packs will work, at least for treatments of 3 to 5 hours. I would suspect that a longer treatment might be different.
As for scalp mets, my onc had no concerns and said to go ahead with my caps, but to prepare for the fact that they may not work, just to be safe.
An education nurse actually provided the gel mitts and booties for my use for the last five sessions and they helped with the neuropathy. I think it would have been far worse if not for them. The only problem is, I could only wear the mitt on the hand without the i.v. but having not had surgery I could switch hands weekly.
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I had my last treatment today and will be shipping my caps back tomorrow! It was a tiring day but so glad I stuck it out with them. After the heavy shedding I had after my first treatment, I switched to the thick hair regimen as I think my hair was perhaps more on the thick side where the caps are concerned. I have had much less shedding since then.Today I also asked for something extra for nausea during treatment due to the caps. They gave me a Compazine tablet and it seemed to help.
Susan, I saw the piece about the Penguin Cold Caps in Oprah's magazine too! It's great the word is really getting out there.
I think the world wide web can be thanked in part for getting the word out about these new caps as well. Back in the 80's there were no web sites, discussion boards or other easy online access to all this information. Thank goodness for technology - all around!
kgg, good luck with your treatments!
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My ONC just said "Oh I haven't seen those in years" and then preceded to tell me why scalp mets were not a risk...so that made me feel better right away. One of my nurses has had a patient use them in the past, and other has asked if they can give my info out if anyone is interested
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Hi Marie3, can you clarify what the thick hair regimen is? I want to make sure I'm following that. Thanks.
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brax: about 20 years ago when scalp cooling, as a possibility, first came into awareness, people made 'caps' that were essentially like shower caps filled with ice cubes. Naturally, they weren't very effective. Elasto-Gels fared somewhat better but not enough. Older nurses and doctors often remember that scalp cooling phenom. from 15-20 years ago and remember it as uneffective. Odds are excellent that they have never seen Penguin Cold Caps, and the accompanying hair care protocol (which is essential) are the technique that work the best by far with many chemo cocktails. Variables include hair quality, whether hair has been chemically treated; liver function; overall health and general wellness.
lbrewer: my onc supported me with whatever I wanted to do. She was skeptical, but I kept 90% of my hair. She now recommends the caps, as do all my physicians.
kgg: I coached a friend who used caps with ovarian cancer; she was on chemo similar to mine (TC, but more intense) and kept about 60% of her hair. PCCs are best known in the breast cancer community but the biggest variable is the type of chemo, not necessarily the cancer. Good luck! I'm pulling for you!
lbrewer and everyone: RUN, RUN, RUN from Advance caps. They are recycled (used) Elasto-Gels. The proprietor is on the lamb for having stolen funds from hurricane Katrina victims and is now preying on breast cancer patients. There's a special place in hell for him. He was kicked off of breastcancer.org (having posed as a patient to get access).
re: scalp mets: You have a one in a million chance of developing leukemia, as a SE, from taking chemo (such as TC). You have a one in ten million chance of developing scalp mets, and that's based on studies with Stage IV breast cancer patients. One study actually shows there is less chance of scalp mets by using cold caps. Next time a doctor challenges the use of caps because of scalp mets, ask him/her about the risk of leukemia and whether s/he thinks you shouldn't take chemo because of that risk. Then point out that there is an even lesser risk of scalp mets.
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Victorious2012, For users with thick or Afro hair, 10 minutes after the 4th cap has been placed start the chemotherapy. This means chemotherapy starts a total of 70 minutes from the start of wearing the first cap. Change the 4th cap after a total of 30 minutes of use. And all subsequent caps after 30 minutes of use. The temp I was given to use was minus -32 celcius and stuck with that. Not sure if I would have been given a cooler temp if I had put thick hair on my application.
I also cut an pasted the instruction page I got with the schedule of when to put each cap on and printed out a fresh copy for my helper to use as a checklist with each treatment.
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TC...I'm right behind you, checking my pillow every morning. It is still too soon to know. Oh the waiting, waiting, waiting.
Sebm9...Thanks for explaining the earlier method of scalp cooling. I am starting to get a little anxious at day 13. Mostly worried about area above ears and nape of neck. I am expecting to lose there as so many have, I 'm just worried that I will have giant patches there. I will definitely feel better the second time around I think. The first time, there is so much stress worrying that everything is being done right and quickly enough. There were some cap redo's - some not feeling tight enough or gapping at the bottom in the back. Also, sometimes it felt like the top back was not sitting flat and tight enough, like there was a gap-I'm talking about the top of the head in the back the cap gets pulled and velcro almost feels like horns sticking up worried good contact not being made - those were changed as well. Tried to get the straps over ear area and nape of neck. Even with the practicing there were still some redo's just hoping it will all be okay.
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geewhiz - did you experience post-chemo shedding? how long? do you think the highlights affected it? I did do a non-ammonia based color to cover the gray between my last two chemo rounds - at the time it did not cause any shedding - and now I'm kicking myself wondering if that's why I have so much shedding now - 9 weeks PFC and still shedding.
thanks
Lucky
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geewhiz - did you feel that the Penguin caps were a success and would you do it again? My daughter starts chemo on March 26th... every 2 weeks for 4 months, as they are trying to shrink the mass before surgery. I don't yet know her drug regimen, but I know that she got a "triple negative" result for Tamoxin.... meaning that it won't have an effect on her body, so they won't be using it after surgery. It's so confusing to me... are there alternative meds that docs use in place of Tamoxin? I have had several people in the Atlanta area contact me regarding the caps, and I am so appreciative. I live in IN, but am headed to GA next week to help my daughter. Her oncologist at Peachtree Hematology-Oncology is Dr. Ballard, and she really likes him. I plan to contact another lady I met on here for a "cold-cap instuction course", but if you want to inbox me your info, I would appreciate it... in case our other plan falls through. This forum is so helpful... just wish my daughter would jump on and read all the helpful comments.
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portishk~
I hope your daughter does end up jumping on the forum. My experience with Penguin Cold Caps was sooo successful. I was on TCH X 6 and I only lost a bit by both of my ears. I wish everyone had this opportunity that needed to do chemo.
Hugs to your daughter.
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Do they hurt? Are they uncomfortable?
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Stacie, Most of us took ativan during infusion. Once the first few minutes passed I did not feel them really. I wore an electric blanket to keep me warm and I did just fine...and I normally HATE the cold. I was worried before chemo that I would not be able to tolerate the caps, but I did it with no real issue.
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portishk, I only lost a bit above my ears as well, and would do it again in a heartbeat, but hope I never have to!
Stacie, I didn't have Ativan, but I took an Alieve before I started and they only hurt for a few minutes. It was really no big deal (and I am a baby when it comes to pain)
brax, The first time is definitely the most stressful. We adjusted and readjusted numerous times, so I was scared that I would have patches of hair fall out. Then after I didn't lose any hair, we still had times of readjusting, but I knew it would be ok. I have a big head and ordered the extra gel bands after the first chemo.
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Another question. I thought i saw a link for an electric cold cap. Now i cant find it. Was that a Vicadin illusion?
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Stacie, There is a girl on here using one. They are new from Penguin and I believe they are only available at selected hospitals.
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Stacie: I'm the one using the Penguin Cold Cap machine. It has a tank where you put about 35 lbs ice and a gallon of water. It continuously pumps this cold water through a cap for the period of usage. It is not as cold as regular cold caps but I'm told it works just as well. Since I'm only 14 days out from my first infusion, it is still too early for me to make a call. It is definitely more convenient though. Since there are only about 10 of these machines in the U.S., I don't think Penguin has done any advertising for it.0
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I am struck by the fact that I had no idea how much hair I lost around the edges until it started growing back in! It was covered up my the fall of my hair.
I am so grateful for the new and hair and so, so grateful that it is not the only hair I have.
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Me, too, Lady Grey. I now have 4" hairs all over my head that I didn't even realize I had lost. When I got my hair cut, she was blowing my hair dry and we could see the short hairs all over. I had almost zero shedding during chemo but shedding occurred for 5 months pfc. Everything back to 100% normal now.
So very grateful for Penguin CCs! I have opportunity to tell someone about them every week. Met with a sweet Vietnamese girl who has hair below her hips. Also spoke to girls in CA and in GA this week. The girl in LA, California was told about PCC by her oncologist and given the name of someone who will do the PCC for her as a service! Charges $300 per time and brings the caps and does the cap changes for you!0 -
To clarify my previous post...you still rent the caps yourself, but in addition can hire someone in LA to be the one managing the caps.
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Hi 4th chemo today out of 6. Had a port put in yesterday because my arm was badly damaged by the chemo. Going to take some painkillers today as number 3 cooling cap hurt very badly. Hair on top of my head is very thin but still have a small bob. Hair isn't shedding like it did on number 2 so fingers crossed I'm over the worse. Have heard it sheds after treatment but what can you do. Hope everyone is doing well and keeping happy.
On a brighter note treated myself to some Versace sunglasses to cheer myself up.0 -
Ali - getting my port in made me super sore! I had mine in my arm and the bruise around it was the size of a softball. The pain eases up in a few days. I am glad you treated yourself to a nice little treat! Good for you!
Lady Gray - me too! I lost hair around my face and now it's all 4 inches long or so. I found a whole section on the top of the back part of my head the other day that is 4 inches long and I had no idea that much hair had shed. It proves to me how WELL the cold caps work...you can see that I did lose some hair, but you can also see HOW MUCH I kept!
I started chemo one year ago this month. Hard to believe that much time has gone by! I looked in the mirror yesterday and thought - my hair is getting so long and growing so fast! It feels super healthy too - better than before chemo. I am treating it much kinder and have a whole new love for my hair. I am getting very use to this shorter cut and now that it is growing out I kind of miss the shorter cut. I may not go back to super long hair again! I never thought I would say that!
For those of you going through all of this now or just finished, have faith. You WILL have your hair. We all felt fear of losing it even with the caps - especially when there was horrible shedding, but in the end, the caps worked.
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Howard, do you know the name of the person in LA charging to help with the caps?
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Ali,
So sorry to hear about your arm damage. That's terrible. I hope you recover quickly and that the port makes things easier from here. Sounds like you certainly deserved the nice little treat! Take good care,
Lucky
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Okay, I finally figured out how to attach pictures. Here I am (face shaded due to shyness) hooked up to the cold cap machine before infusions started. You should see the hoses running from the cap to the machine, which is filled with ice and water. It runs off of 12 D-sized batteries and continuously pumps cold water through the cap. I was totally comfortable during the entire procedure. The only challenge was rolling this and the IV pole to the bathroom.
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tc9876, Awesome! It is so exciting to see the next generation of cold caps! I think they will work very well, since the machine will create a constant temperature. Ours probably had to start off so much colder in order to stay cold enough to last for 30 minutes.0
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Wow~that is so cool. (pardon the pun.)
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TC9876,
Thanks for sharing! please keep us posted - my husband actually thought that this would be a doable way to make the process easier - I told him that someone beat him to it - Lucky
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I'm on cytoxan and adriamycin. But only had one treatment. Is it too late to try and save my hair? Where do u get a cold cap? It was never even mentioned to me.
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