Cold Caps Users Past and Present, to Save Hair
Comments
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Keep the dry ice in the coolers and fill any space with towels to keep the dry ice from evaporating.
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I had a distressing experience today at my third of six TC infusions. My son who helps me with cold caps discovered the freezer at the onc office only had 4 caps frozen to the correct temp. The other 11 were sitting at room temperature stacked up on a table. I asked him to get them in the freezer ASAP and "hope" that by the time we needed them they would be at the proper temp. Unfortunately they were not. They averaged 20 to 23 degrees below zero which a full 12 to 14 degrees warmer than they're suppose to be. Now I'm worried that all the work and money I've put into CC will be for nothing.
My DH isn't as worried - he said they're still incredibly cold but I am worried. I wrote to my representative and she is also very upset so has called the office manager at the onc office to find out what happened and to have a meeting with staff that the freezer which was donated by the Repunzil project is to be used for only CC. We suspect someone used the freezer for personal use and didn't restock. Whatever the reason I am very upset and hope this experience doesn't make me lose my hair which I have so gratefully maintained so far. Argg
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Oh Gosh Amy i'm so sorry. I would not worry though. Another user told me she wore the caps at 20 degrees becauas she got frost bite if they were colder and she kep all her hair.
Any one else have andy thoughts for AmyQ?
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Oh AmyQ, I feel your fear. To have come this far. But you had 4 caps. That is a good start and you got your temp down and the others will have helped. My fingers and everything else are crossed for you.
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How soon before chemo did youstart taking l-glutamine and B6?
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Good points ladies - I did get 4 good very cold caps started so the others helped too. I appreciate your comments and reassurances. Also good to know that one lady used hers at 20 below and still it helped. Now I can sleep. XO
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Leslie-SusieQ did not include the Penguin caps in her offer. Unfortunately, you have to rent your own caps. You'll still be saving some $$ not having to purchase all the other items.
tmb-Do NOT put dry ice into a regular freezer!!! It will break the freezer. Keep the coolers filled with ice in a cool dark place like the garage. Don't break it up until early evening-this makes the ice last longer.
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AmyQ-I am so sorry that this happened! I have helped many women with the caps and have found, on more than one occassion, that the caps were not cold enough using the freezer. This can happen for several reasons. One time I went to a facility to find that the caps, along with the freezer, were stored in another room when not in use. The facility did not have the freezer plugged in! Because of this, the patient I was helping re-scheduled her chemo for the following day. I had to use dry ice to freeze the caps. 24 hours is not enough time to freeze the caps in a freezer, it takes closer to 48 hours. Because of their failure the clinic reimbursed the patient for the extra expenses. I truly hope you don't lose more hair. I've read many articles on the subject of scalp cooling. Most of the trials do not reach the low temperatures recommended by the Penguin Co. yet, many of the women succeed with retaining a good majority of their hair. I've often wondered if the extreme low was really necessary... Please keep us updated. Your progress will benefit all future cold cap user's. Good luck-I got my fingers crossed!
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AmyQ, what a nightmare! The freezer is really convenient but you're sort of at the mercy of other people. At Abbott I sometimes had treatment the day after another person, and we had trouble with cap temps on those days. Luckily for me the freezer held 30 caps so we could afford to set aside the ones that were too warm (which on one occasion were 15!). On another occasion the freezer started its defrost cycle in the middle of my treatment day, and all the caps warmed up quickly. That day Susan rushed over with some dry ice but it didn't help much. Another time we arrived to find the freezer temp was too warm, and the first few caps were too warm (we were able to reset the temp). All that to say that for a few of my 12 weekly treatments I had problems with cap temps, yet everything turned out great for me - and hopefully will for you too.
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AmyQ, wishing you all the best and here's hoping they were plenty cold enough!!
I exchanged a private message with Leslie and I'm so bummed our dates don't align for her to leverage my supplies as her start date is before my end date.
The offer still stands for anyone in the Bay Area who can wait until June 7 for the supplies (free of charge) listed in my post on 5/20. Please private message me if you think you can use them and we can arrange a time and place for me to get them to you.Susie
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Hello Ladies, My hospital has a cancer center and has been doing clinical trials on cold caps. they have been using the PCC caps for a while. (also they are testing a new device called Dignitana- but this is being tested for women getting TC chemotherapy only and it is opening in about a month. It is similar to the Paxman system which is aircooled electronically and sounds so awesome! ) My center has a caps cold penguin freezer so i don't' need coolers and just bring them in warm and they handle the rest and keep them thoughout my treatment for me. They say their successrate is really high and most users keep their hair without much loss. They say problems dont really come from how long people keep caps on but more from how people in general tolerate the chemo in their system
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They have been doing clinical studies and find the women who only leave their caps on for one hour after treatment have no different result than those who leave it on for 3 or for hrs after. The oncologist who are monitoring this find no medical evidence that your scalp needs to be frozen for more than an hour after chemo ends and they think its barbaric and ridiculous that PCC tells their patients to keep the caps on so long an the cordinator says it may just be overkill for liability reasons. So i'm wondering how long you all wear your caps after your treatment? PCC told me to wear them for 4 hrs after!!!!! My cordinator says the onc thinks it's ridicoulus, but I can if i want to... she says she would not go over 2 hrs personally. thoughts?
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I did the four hours and it worked. "Barbaric" perhaps, but I have my hair!
It would be interesting if shorter times would work as well. You have to look at the halflife of the chemo drugs in your system (sorry for being a scientist here, but it's what I do)- from the research I did before starting chemo and caps, a pretty high amount is still in your circulation at one hour post-infusion. For my regimen at least - TCH.
During the four hour follow-up our scalps are numb, at any rate!0 -
Hello everyone,
I have a question as I near my first treatment. I tried taking the silica as recommended but developed an awful rash. Anyone else allergic or know of someone who had this reaction?
Thanks,
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Leslie - I did the four hours too. I hope your facility will publish their results so that future users will have better information.
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I did the four hours, too. Length of cooling time is one of the many areas that needs further study. The Paxman folks have some info on cooling times for their system (which differs from PCC and is not generally available in the US). Info at: http://www.paxman-coolers.co.uk/recommended-cooling-times
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Well I wish they had this science down! Would you believe, I have to wear the caps for 7, yes 7 hours after infusion due to having thick, curly hair. It is an exhausting day!!!! But, well worth it. Though I do miss my thick hair, i am happy that i still have enough hair that people don't know what is going on with me.
curly0 -
curly...7 hours post? OMG. I was at my limit at 4 hours post, for sure - because that meant from start to finish I wore the caps/did changes for about 8 hours. I cannot imagine how long your day is! You are a tough cookie!
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Thanks dancetrancer. Yes, up at 5am, done capping around 9 or 9:30pm....by the end, i am soooo done with the caps, it literally takes me the whole 3 weeks between infusions to build up the nerve to do it again. I dread it! #4 of 6 next week...yuck! I wanted to wear the caps inbetween tx's to promote hair growth, but i can't bare the thought, so i don't!
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Day 1 finished- Yay!!!
I am so wiped out I put me caps back in their containers and returned to my freezer, but I wanted to clean them tomorrow. What does everyone use? Just soap and warm water? Any other cleaning tips? What have you done after a treatment? Thanks.
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You don't have to clean them until you're ready to ship them back.
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Tmb, congratulations on finishing day 1! I felt wiped out after each treatment too - a long day for me and my helpers. I was lucky to have a freezer at my facility, and because others were using the caps in the freezer my helpers cleaned each one before putting it back in its box. We were told to use alcohol on a cotton ball to wipe down the cap. Also one of my helpers brought some sort of a comb thing with her and cleaned all the accumulated fuzz out of the Velcro - which helped get the Velcro to stick better.
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Curly- seven hours- amazing. Your tenacity is admirable!! I was definitely done at four hours post-chemo. But, looking back, it is all Sooooooo worth it. I hope at least you are at home and snuggled up for the majority of those seven hours. yikes!!
I agree, looking like ourselves through treatment helps us FEEL like ourselves through this tough time. I dont want people's pity, just to get through my day with as little drama about cancer as possible, not all the "sad faces" and awkwardness of the few people at my University who do know what is going on with me. The cold caps allowed me to be "me" with everyone else.
I go in for my exchange surgery in a few hours, yet another step in the journey to recovery!!0 -
Hi,
I have a few questions. I live in Santa Monica, Ca. where can I get cold caps? Are they expensive? Are they difficult to work with? I would appreciate any help that you have to offer.
Thanks,
Kate
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Start with this...
https://www.dropbox.com/s/n2wzrklpf4ufori/ccc-booklet2b (1).pdf
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My rep said that PCC reccomeds taking Biotin and Silica? But that is all the info she will give me. Can anone tell me where to find it and the dosage?
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tmb - congrats on finishing your first round! I know what a relief it is to take off that final cap at the end of a very long day and finally get some rest. My helpers cleaned all the caps each round, using 90% rubbing alcohol and a cotton balll. Just a quick wipe down- my consultant recommended this to avoid any odors and oil building up.
Leslie - Biotin is usually 5,000 mcg/day and the Silica the inventor recommended to me was around 500 mg per day - I take 225 2X a day. Hope this helps!
Katehudson- After you check out the article recommended, let us know what questions you still have. The caps do take effort, but have saved my hair and allowed me to keep my situation private since I still looked like myself through it all. Don't be discouraged if doctors and nurses try to steer you away from the caps - there's a lot of misinformation out there based on old versions of scalp cooling and many oncologists haven't had a patient try the Penguin caps so they don't know of all the success. Either way, I wish you all the best!
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Science gal, I hope your exchange surgery went well and that you are happy with the results!
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Hi Hope49,
What is the name of the article recommended? Where do I find it?
Thanks,
Kate
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See my link to the booklet right after your first info request...
Aw heck, here it is again...
https://www.dropbox.com/s/n2wzrklpf4ufori/ccc-booklet2b (1).pdf
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Hi rt44252961, Thank you so much. The first time you sent the link did not realize you were talking to me.
xoxo,
Kate
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