Cold Caps Users Past and Present, to Save Hair
Comments
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I have to chime in to say they may well work for you Peachy, to help your hair grow back more quickly. Good luck!
I say that because to my surprsie, today, I discovered that I have a bunch of 1 1/2 long hairs coming in all over. I hadn't seen them before because I had been busily looking and feeling for for short fuzzy ones thinking that my hair would start growing about now since I was four weeks past chemo. I never thought that my head would have been growing new hairs all during chemo, but seems that it has. I have the strangest mix of blonde, gray and dark roots so it was hard to see what was happening, plus it's hard to see on the top of my head..
I finally realized that a lot of the dark roots were inch and a half long new hairs, so I looked carefully through the gray/blonde areas and found the same length blonde/gray hairs. It's so exciting! Especially as I am still shedding.
The only short hairs I have are those growing on my frostbite spots. My eyebrows are also coming back now which is nice because my face looked so bald and bland without them. I realize that they may fall out again a few times, but it's fun to see them again. I never lost all of my eyelashes although they have thinned and been itchy for months.
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Peachy - yay!!!! Great presentation to your onc!
Hortense - very cool. I need to look closely at my head and see if I can see the regrowth. I think I see it along the edges but wasn't sure if they were just broken off hairs.
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Wow, I paid $130 per session for the helpers that did the caps for me. I don't think I would have been able to afford it at some of the rates being mentioned. They did an excellent job. No bald spots at all. Anyone need someone in MI, please PM me.
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Everyone, I know that helpers should charge..I would have paid mucho dinero if I didn't have close friends and family....but I will help anyone I can for free in Houston..if my work travel can be arranged....and at the least will train a helper...I am very "anal"... LOL detail-oriented....so just PM me and will do what I can.... The caps and keeping my hair did wonders for me ...emotionally, physically....xoxo
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WOW~
I just told my husband how much some cold cap helpers were paid.
He wishes he had known that 3 years ago. Ha!
Between you and me he was a bit of a grouchy helper. (or maybe I was the grouchy one.)
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Dancetrance and tc9876 ....how is your battle with shedding? I so want it to stop but my hair won't listen! 13 weeks ...will have to start saying months now....eeeshh
Random thought..... .has anyone ever gone in a natural hot springs pool post caps? There is one we could stop by on a vacation that has pools with 90 and 104 but am thinking/knowing the temp and whatever they do put in or what naturally is in the h2o is probably not a good idea....is the 6 month of fragile hair care still the protocol ?0 -
Janeoz: At almost 9 weeks PFC, my shedding has decreased dramatically. I sometimes wonder if it is because the chemo effects have left my body or because I have so little hair left. If you recall, I lost about 50% of my hair with the PCC machine, with the majority of it falling out after the 3rd chemo. I can tell that my hair is growing back. I'm not sure how fast it is growing but it is probably slow. I've heard that Herceptin slows growth. I'm not taking any hair growth supplements but I may start after I finish radiation.
My dilemma now is whether or not I should cut my hair (it's thin) and, if so, when and how much. Right now, I just keep it pinned up. Decisions, decisions.
I heard from one of the nurses that one of the ladies using the PCC machine after me had major problems...hoses leaking, etc. I would have been SO irritated at that. I remember when the machine shut down on me and I couldn't get it restarted for ~20 minutes. Talk about panicked. I was one of the first to use the machine and it was a HUGE convenience for me. However, I truly believe I would have held on to more hair with the regular caps.
At the end of the day, whether one uses Elastogels, the regular PCCs or the PCC machine, results should definitely be better than doing nothing at all. I am very happy to have hair on my head and not be bald.
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Janeoz - will be 9 wks PFC tomorrow - still shedding. Maybe a little less this morning with my regular combing - but it is so variable, I'm not sure!
As far as I know, 6 months is the official "fragile hair" PCC guideline.
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Hi girls. I have a few questions. I KNOW everyones PCC treatment varies, but nobody at all has given me a roundabout price. Again, I know it is different depending on what you need... Are PCC's only rental? And where and when do yOu learn all the specifics everyone talks about here.. As you all know, there are over 200 pages to this forum and it would be impossible to scan all of the conversations over to find this out.. So again, I am interested in
1) average price for rental/retail
2) where and when will the patient learn all of these specific guidelines?
3) how soon before the start of chemo, does someone need to have these caps on hand? Does it take a long time to ship?
4) are they chilled with dry ice? And where on earth do you buy dry ice?
Thank you so much girls. This forum has helped me and my mother a ton. EveryOne who knows about PCC already knows all of this and from my experience it's been like pulling teeth tO get any info out of them... I do understand that a lot of info goes into understanding but those are my main questions above.. Can anyone help?0 -
Hi AngelFaith!
Here are some links that will provide all the info you need.
1. http://www.msc-worldwide.com This is the PCC web site where you can rent the caps
2. http://www.rapunzelproject.org The Rapunzel Project -a charitable organization raising awareness and donating freezers to medical centers willing to accept them.
I just had my final chemo on 7/27/12 (TCx4). I used Penguin cold caps and still have a full head of hair. It was uncomfortable and a lot of work but I am so glad I did it. Cap rental was about $1600. Dry ice cost $80 per treatment x4. I bought it from a local supplier that I found on the internet. Some large supermarkets also sell it. I also had to purchase 2 coolers, an infrared thermometer and a few other supplies.
Read the info on these websites and then email me. I will send you a personal message with my email address. I was able to pull this together in about 7-10 days and save my hair. I seemed overwhelming when I first started looking into it but it is very doable if you are motivated.
Good Luck!
Lori
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I, too, stumbled around here trying to learn more about them before deciding to rent, but I am so glad I did. Definitely go to the websites mentioned by LAZ.
1. PCC are rental only. Interestingly they are paid for in British Pounds at £500 a month (by credit card - Master or VISA, not Am Ex), even though they are shipped by FedEx to you or your center from an agent located here in the states. The box weighs about 80 lbs. I have learned that if two women want to share them that a discounted rate applies so that each pays about two thirds of what they would cost by themselves. So if you can find someone else at your center you both can save money, and your hair.
2. I used FedEx's two day shipping which was quite reasonable ($60?), vs its one day ($350?). You will need to have them a few days ahead of your first chemo. If your center already has a freezer, as mine did, you will be able to put them into it for the duration of your treatment and use them when you are there before returning them to Penguin. My center's freezer had been donated to it by the Rapunzel Project. You might be able to get one donated to your's.
3. Penguin will ask you about how much and what kind of chemo you will be getting, then email or send you detailed instructions for use based on the answers - its protocol. If your head is large, as mine is, you should get extra eyebrow straps to use around the bottom of the caps to cover areas that might be missed otherwise. It worked for me.
4. You will need a helper each time you use the caps during your chemo treatments as you can not put them on yourself, hooked up to an IV and possibly woozy as you may be. That person can be anyone willing to carefully follow the strict protocol sent by Penguin. Some use family, others use friends and some hire a helper.
My helper ordered dry ice from a local supplier which delivered it to her - check google for a supplier near you - and brought it in a rolling Coleman cooler. She used the dry ice to cool down the caps from the freezer to the correct temperature for my protocol and checked each section of the cap with an infared thermometer before wiping any moisture off of it carefully and putting it on me. She had a second thermometer in case a the first one stopped working, plus she had extra batteries for them. She also had two kitchen timers to be sure each cap was on for the correct time period.
You can also use the search tab on upper left of this page to find :
"Cold Cap Usage Tips"
"You can keep your hair!Good luck!
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soltantio, Penguin charged me full price for the first 3 months, then only about $75 or something like that for the 4th month. I hope that is still their policy.
Do you have any family or a friend that can be your helper? Anyone can learn the technique after a few practice runs. If I lived anywhere near you I would be your helper for free. I'm sure most of the women on here would do the same.
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soltantio, Glad to hear you hair is hanging in there!
I actually had the caps for a little over 4 months because although I had my caps, I was waiting for the freezer to be delivered to my center, and they still gave me a discount for the 4th month. Speaking of which, have you asked your center if they will accept a donated freezer from www.rapunzelproject.org? Much more convenient. It is a biomed freezer that will keep the caps at the correct temperature. It has a lock and you just leave the caps there. My center didn't want to accept one at first-no one there had ever heard of cold caps. They were concerned with liability etc. Liability for what? Afraid someone would stub their toe on it or something? Anyway, they finally agreed to accept it, with the stipulation that it was "mine" and my responsibility to insure it. I called my insurance company and they said anything that is mine is covered under homeowners.
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soltantio: you might check with the volunteer dept. of your cancer center's hospital. Perhaps somebody would volunteer to help you? (I'll bet you get takers!) I direct a very large hospital volunteer program, and prioritize special patient-related requests all the time -- with lots of volunteer "takers" eager to help. Just a suggestion!
Susan
p.s. if it helps, PM me the name of your hospital/cancer center, and I'll see if I can make direct contact with them.
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I live in the Dallas area and saved 90% of my hair with PCC. With my husband we have helped 11 girls successfully do PCCs. It is our pleasure to spend a couple of hours teaching their helpers how to do the caps, let them practice, share our tips and loan our coolers, thermometer, and elec blanket. I am so thankful for PCC. It's our pleasure to help with no charge.
Several of the girls have become new friends. We truly grow to care about them and pray for them as they go through chemo.
I was the first at the major medical facility and no one thought the cold caps would work. So fun to watch PCC work so well for others.0 -
I agree with you howard...
My husband and I have helped a number of couples in our area with no charge.
It is a great feeling to get the information out there and be able to help others.
The one positive I see with cancer...
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howard: great to hear from you! We too have helped many women (and helpers), either in person, or on the phone, and for myself -- lots online. It is a gift to be able to give back.
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soltantio: sorry you are having difficulty with the tangles! My usual TJ's conditioner worked for me, but I sure did spend an extra-long amount of time gently, patiently, working tangles from the bottom, a small section of hair at a time. So glad you got that swim! I felt lumbering by the 4th chemo, but I felt so much better by the end. I'll confess that PFC, it took about 3 weeks for the swims to actually be refreshing again, as my energy returned.
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soltantio, I used DermOrganic shampoo and conditioner, after reading several recommendations from PCC users. They worked great for me, but I have thick, slightly wavy hair. Do you have curly hair? It sounds like those of us with curly hair have more tangle trouble. If I were you, at least for the time being, I would use whatever works - parabens and all, because you do not want to pull on that poor fragile hair.
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I used whatever works for my terrible tangles - Joico Reconstruct leave in spray. My hair looked MUCH better after I started using it.
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Soltantio, if your hair is long enough, you can try wearing it loosely braided. That really cuts down on tangles. I am using the Sea Chi shampoo and leave in conditioner. Working well for me.
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soltantio: I did not wash my hair every day; I *rinsed* my hair every day after my daily swim. I only washed once/week, and that is when I got the tangles. Just to clarify!
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That is the protocol with pcc's. Wash gently only once/week and only use cool water. Including six months pfc. This info is included on my writeup.
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They told me wash every 3 days, which would be twice a week, same as soltantio. They must have changed the protocol.
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Goodness. I'm catching up on the blog....helpers charging! I guess everything has a price....so sad. I'd love to help anyone, FREE!!!! Caps aren't popular here and I've tried to talk to some of the organizations to try and spread the word but no one calls me back!
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It could have changed; 2 years ago when I did caps it was 1x/week. Twice a week would have been awesome!!!
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My hair was foul three days after chemo because I couldn't wash it for three days before it. Washing it was nervewracking, but so welcome. Combing it afterwards was very hard as it had tangled so much. Once I learned how to pat the shampoo in and just squish it thorough my hair by patting and not to rub and tangle it during the washing part, it was much easier to comb through.
It was especially nice to wash it as it seemed that the smell of chemo came out through my pores and scalp and I wanted to get rid of it. I could definitely smell the chemo for about a week and a half after each session.
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Hi all, haven't posted in awhile.Got thru treatmens AC/T 4 wks pfc still shedding slightly more on wash days, id say i lost 30/40% of hair but glad to still have some.The patches at my ears have filled in fast and lots of regrowth around hairline. looking for some advise with colouring. I know to wait till shedding stops, i have bleach blonde highlighted hair with brown roots nearly at top of my ear now. think my best option is to try dye it all brown and wait the 6mths to try highlight again??Goin for surgery nxt wk so maybe after recovery treat myself to a trim and dye.
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Anyone know how much silica is recommended for our hair?
I just got Biosil liquid as someone a while back posted that it is absorbed more readily than capsules. It says to put 5 drops in 1/4 cup of juice twice a day. As each dose is only 5mg, that means 10 mg a day. I thought I remembered soemone saying we needed 30 mg a day.
I checked the Penguin site and all I could find was an older recommendation by a moderator in the forums to take silica, but with no mention of a daily dose. I will email Geralyn to see if she knows also.
Thanks
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Maybe this question is already addressed somewhere, but how did you ladies find your "experienced" cold cap helpers? I'm not 100% sure that my DH will be able to be at all of my chemo days due to work, plus honestly I think that he would be grumpy and/or paranoid about not doing it right, which would make ME grumpy (grumpier). So I am willing to pay someone to help, just to relieve the stress, but I can't figure out where one finds such a person. I am in Atlanta, getting my treatment at Emory. Any ideas?
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