Cold Caps Users Past and Present, to Save Hair
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Schoolmom, JLow, and the others that have responded - thank you so much for your support. I have read much of the posts on this site, very few have been on my regimen it seems (FEC-D) and those that have - doesn't sound all that promising. I am ready with my caps, we have practised. I still can't get a comfortable position with the chin strap. On its own, it is fine, but once I add the black strap and then the gold strap (I have thick, curly hair), it becomes hard to tolerate. Not sure how I will fare, as they want me to keep the caps on for 6-7 hours post chemo. This is very nerve wracking.
I have my first Tx this coming Thursday and am feeling so overwhelmed, stressed, sad. I am trying to tell myself that I am at least trying - if it doesn't work, at least I tried because otherwise I would always wonder if the caps would work for me. But the thought of losing my hair really saddens me. I shudder at the thought of advertising that i am "sick". I would rather have my privacy, with no one knowing.
Wish me luck,
curly
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Hey ladies, I confirmed with my onco that I can use the cold caps during treatment. However, he did mention that these cold caps have not shown any success in the past and that the company Penguin Cold Caps is not really saying the truth. Apparently, the hair will start shedding a lot to the point where one has to start wearing a wig. Also, he mentioned that the new hair will not come out good - don't really know what he meant by that. He asked me to verify with other ladies who have went or are going through the same chemo as me: AC 4 x every 21 days followed by T for 12 weeks every week.
I've read a lot of your comments and most of you did keep your hair although it was thinner. The only person who confirmed she didn't loose all her hair during the AC module was TXSocksMonkey. Is there anyone who's gone through the same regiment as mine who can provide more feedback? Is it worth starting with the caps? Thanks a lot!!
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Modavie,
There are only 3-4 AC girls on here. I'm on day 22 since chemo 1. The other ladies I spoke to lost about half their hair. I lost maybe 20% this past weekend alone but have full coverage. My 3rd AC is Thursday. AC only has a 50% success rate on clinical trials and I've read all of them. Not to scare you... I've talked to all of the AC girls and seen pics. It's a risk but we have nothing to lose but hair. So why not? I'm keeping pics. Send me a PM with your number and I will text them to you. I'm happy to call you too. Hell, I'll call you during chemo!
Remember, I'm dose dense so my chemos are two weeks apart. My first and second were only 11 days apart and my second and third are 13 days. Very risky.
All the other March chemo girls who started with me are bald. Totally bald. I have full coverage still. I don't know if it will last but Taxol is supposed to be easier. Please PM me. I'll give you a pep talk.0 -
modavie, what your onc said is pretty much what most of the oncs say, yet they never have had any first hand experience with patients using the caps and are basing their opinions off old versions of the caps and misinformation. My MO has been very impressed and happy with my results and always says how he can't believe I still have 'all' my hair...I know it's not 'all' there, but to the outside world it looks that way and you can still live your life choosing who you share your illness with...
TO ALL OUR NEWBIES: I have read all 260+ pages of this board and know there were a number of ladies who were on A/C that did well. We all shed and all will go through the panic stage where you're sure it's all coming out, but if you compare to the non-cap users it's nothing close to what they experience. I was quick to say that I shed about 50% by tx3 and then my husband reminded me that would mean I lost 50,000 hairs...now I had some bad days, but I know I haven't picked up that many hairs...probably not even half that, although my hair is thinner...I think not being able to pump it up the way I used to also makes it seem a lot thinner.
Bottom line, the caps work and to varying degrees we keep our hair through chemo, but there's definitely a sense of concern we all have when the shed(s) come...reading all the pages in the board helped me see the stories from beginning to end (success) helped my settle down and just be greatful every morning when I woke up and still had my hair. I wish everyone the best as you start treatment - stay warm and hydrated and keep your questions coming!
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Hey TXSockMonkey, you mentioned that all the March AC girls lost their hair completely. Were they using the caps?
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None of the March AC chemo starters are using caps except for me.
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Curly - my local cold cap rep had me simply pull down on the chin straps while the cap was being placed and the various straps attached. Once the cap was completely velcroed and strapped on, she told me I could just let the chin straps hang loose, that they weren't really needed. I did sometimes feel like the cap was migrating upward a bit, so after the first couple of treatments I did use the chinstrap, with a folded up hankie as padding. But try just pulling down on the chinstraps while the cap is being placed and "installed", which will keep it in the right position, and then fasten it.
For those doing AC followed by Taxol, I can confirm that the caps work wonderfully for weekly Taxol. I didn't have any chemo other than Taxol for 12 weeks. I really did not shed at all during treatment! I'm about 3-1/2 months PFC, and I have started shedding just a little bit, maybe 4 weeks ago. Nothing concerning, but I do find it interesting that I never started shedding at all until more than 2 months after chemo ended.
Good luck to all of you currently using cold caps or getting ready to start!
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So here's a dumb question for the cold cap 'old timers' amongst us.....when did you start treating your hair 'normally'? I'm just about 4 months PFC. Very little shedding - maybe 10 hairs per day except on a hair wash day and maybe 30-40 then. I lost some volume overall (my daughter says maybe 10-15%) but no bare patches (even nape and temples) except where I got frostbite on my first session. That new hair is now ~ 2" long. I'm still washing every 3-4 days with tepid water and no styling.
When you went back to 'normal', did that mean warm water, blow dryers, and curling irons or ??? And when did you put caffeine back in your diet and stop the biotin and silica?
I've spent so long protecting my hair I'm very hesitant to do anything to it.
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I was going to do some research today for a newly diagnosed woman, and I see that PCC has a 'new' website...its www.penguincoldcaps.com (and you get redirected from the old site as well). It looks really good, although mostly has the same info from the original site...I wish their discussion forum would get more traffice as there's not a lot for a newbie to learn there, compared to this site...it would also be nice if they had a place outside of the forum where people could submit their own success stories and maybe a reference page by state where you could contact someone local? I'm going to see if there's a place to submit a suggestion. Just wanted to share the info...
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I finished chemo in the beginning of May and by mid September I finally just did what I wanted with my hair. I was shedding a lot PFC. At that point I started blowdrying my hair straight and using a more permanent color on it. I still use the same color I used then called Naturtint. It is vegetable based and has way less chemicals. My hair is SO healthy - better than it was when I started chemo. I still only wash twice a week....my hair is never greasy anymore after cold caps. That's a bonus!
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Are you supposed to skip caffeine for the cold caps or for some other reason?
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According to the hair protocol info sent out by PCC, caffeine taxes one's liver. If your liver is working overtime, it can affect your hair.
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And what are the biotin and silica for? Sorry, I'm a newbie who's trying to get as much information as possible before starting the cold caps.
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301724 - I started using warm water and blow drying at about 2 months PFC - I thought it would be OK because I really never had any shedding to speak of. I never took biotin or silica (MO said no). I have colored my hair twice using a no-ammonia, no-peroxide color, but next time I'm going to have my color person use the "organic" stuff she used for my last color before chemo. I had my second PFC hair cut today - stylist is still amazed that my hair is all there and in such good condition.
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Thanks to everyone who has posted here. It is so helpful. My oncologist has no experience with cold caps and seems a little doubtful but she says she'll support me in it.
I've been trying to compare brands. Penguin seems to be the most common but the price is daunting. Does anyone know the success rate of the elasto-gel caps that are sold on Amazon.com? Has anyone had any experience with them? Are there any other companies I could check into?
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There are a few girls on here that have used elasto gels. PCC's have the best success rate and are worth the money if you want to keep your hair. If you are going to spend the money, you should just spend a bit more and have a higher success rate. Success rate also depends on which chemo you are having. Which chemo will you have?
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Thanks mdg, you may have a point. I'm doing AC for 4 sessions and then Taxol for 4 sessions.
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shipsgirl, AC is a toughie, go with Penguin for sure.
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Hi jc, both the biotin and silica help with hair growth...I take 5000 mg biotin once a day and 225 mg of silica twice a day. I also take 15 mg zinc twice a day as that can also help with hair. For other health reasons, I take 2T ground flax seed in my smoothie each morning, but I know that helps with hair health as well. I figure every little bit helps! I also started taking an iron supplement because I was becoming anemic from the chemo and heard on the board that sometimes that stopped the shedding...may be coincidence but I did notice a big slowdown after a week of taking it...we'll see if that holds out now that I am PFC. Hope this helps!
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shipsgirl - Using cold caps with T/C seems to be more successful than with ACT according to my oncologist who has been doing a study on them at her center in NYC. That doesn't mean they don't work for ACT, they just may not save as much hair as expected. If I were having ACT and considering trying cold caps I would definitely pick Penguin over Elastogels as everything I have read on here and elsewhere seems to indicate that Penguin users have had more success consistantly.
Consider it this way, if you rent Penguins you are paying monthly, so if you are not satisfied with the results by four weeks - and you will know by then if they are working for you, you can end the rental, return the caps and only be out about $500. If they work for you, you can keep on renting.
What ever you decide to do, do not forget to ice your nails, both hands and feet, to prevent damage to your nail beds and nerves.
Good luck!
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301724: I started treating my hair normally at about 4.5 months PFC, except for I did not do highlights until 6 months PFC.
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Laura and Hortense, the more I'm reading, the more I'm seeing that ACT is pretty heavy duty. Thanks for the input. I did phone Penguin and no one ever called back, but I've sent an email now. It seems that Penguin has the lead in the market, and if I'm going to do this, I should do it with the best.
My nails are my other vanity. I currently have acrylic nails. Can I keep them, or do I need to remove them and start conditioning the nail bed? I've had acrylics for years and the nail underneath is pretty soft. It's going to be a pretty cold day to have ice on my head and on my hands and feet too. lol
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Shipsgirl, I'm a DD AC-T girl who is a bit ahead of you. Feel free to PM me and send my your phone number if you'd like and I'll send you pictures. I'm on day 25 I think and have my 3rd AC tomorrow. I still have full coverage but have shed a lot. I have a bare spot around my left ear. Wish I could get a teeny tiny toupee there and no one would know! I am using PCC's. And everyone is right. The studies show only a 50% success rate on AC-T but with some new protocols, they are improving (i.e., wearing them for a lot longer). Good luck!
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shipsgirl, glad to hear you are considering the caps! I just wanted to weigh in on the nails...I would think it's best to remove the acrylics so you can protect your natural nails better...there is a protocol of wearing dark polish on the day of treatment (something with how the drugs interact with the light)...then you remove it the next day and do a coat per day of Sally Hansen's Hard as Nails for 7 days, and repeat until the next round...I did this protocol at the advice of others and my nails grew strong during treatment and really have never been in this good of shape! the other thing to consider - for the 'T' part of your treatment, is the icing...I will tell you it is cold but you're already freezing from the caps so what's a few more areas? I put on latex gloves covered by the stretchy dollar store gloves and stuffed my hands into baggies of ice...for my feet, I used gallon ziploc sith ice that I put the top 1/2 of my foot on (keep socks on!) and then folded the bag back over the top of the toes...when it got unbearable, I just pulled them out for a few seconds and then back in...15 min before the drug starts until 15 mins after its' done. I have not had any issues with neuropathy or tingling in fingers or toes. I hope this helps - keep your eustions coming! FWIW, I do know that PCC has made improvements to help the success rate of ACT and having read every page of this 268+ thread, there are a lot of ladies who had that regimen that would say they had a successful experience compared to the alternative, you just have to be ready to redefine what a 'good hair day' is
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OK, I think there is some confusion between Taxotere and Taxol. My understanding is that icing is a good idea for Taxotere, but not necessarily for Taxol. Icing fingers and toes during Taxotere infusion helps eliminate the nail problems associated with Taxotere. I have read on the Weekly Taxol board that some people do get ridges on nails or lifting of nails on Taxol, but I don't think it's very common. Much more common and worse nail problems with Taxotere. I don't think you need to worry about icing during AC treatments.
I had no nail problems whatsoever from Taxol. Taxol is known for causing neuropathy, which isn't helped by icing. If you start feeling tingling or numbness in fingers or feet, the treatment recommended to me was 15 grams of glutamine powder (that's a lot - a heaping tablespoon) twice a day (total 30 grams per day), plus 100 mg Vitamin B6 per day. I had weekly Taxol for 12 weeks, and started feeling some tingling after the 3rd infusion, I think. I then started the B6 and glutamine - day of infusion and 3 following days - and it took care of the problem. If you google something like "glutamine for neuropathy from taxol" you'll find some reputable studies with good results from this regime.
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Thanks ladies, you are so great. I appreciate the support!
TXsockmonkey, that is very encouraging news. Congratulations on your success so far. I have been growing out my hair since diagnosis. I was wearing it short and spikey but I figured it would be easier to cover any thin or bald spots if it was longer and one length. Have you done anything about your eyebrows?
Hope49, thank you for the advice about the nails. Are you saying I don't need to ice for the AC part? It sounds like I should get the acrylics off and start strengthening them now.
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My nails are great on the AC - no icing. I use hair, skin and nails vitamins before and during chemo. I also use Nailtiques 2+ as my nail hardener/base coat under polish. My nails are like iron now! Much better than before chemo.
My MO prescribed me Latisse at my request. I use it on both my lashes and browns. If you go that direction, throw out the brushes that come with it and get a fine eyeliner makeup brush - it will last longer. My brows are still thick and my lashes are too - they've thinned a little but not noticeable. Also, I hear to use the Latisse for a few months post-chemo b/c you stop and suddenly they all fall out. So keep using daily for two months post and then taper off - every other day, every 3 days, every 4th day...
I've lost maybe 1/3 of my hair using the cold caps, but none of my body hair is falling out darn it! I was totally looking forward to the one positive side effect! I even have that one weird chin "whisker" everyone has but doesn't talk about. Sigh.
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hi sockmonkey, what hair, skin and nail vitamins do you take? That sounds like a good idea. Did you follow the dark nail polish protocol too?
I'm thrilled for you that you've kept so much hair (on your head that is). How was your hair pre chemo? And does that play a part to cap success? Mine is very thick and quite short. I have read that you need to wear the caps longer before and after treatment if you're thick.
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oh, and I had read about the latisse idea. I already use the product - or rather a no-name version. It's a great product and I'll be sure to add it to my brows when chemo starts. So no cold cap bands?
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I just finished round 2 of my TC treatment and have been doing the cold caps. I have not had any shedding outside of the norm for now and keeeping my fingers crossed! The first round of cold caps about killed me - made chemo seem like a breeze, but this time I took some leftover pain meds from my port placement and it made the caps all the more tolerable! There were times that I was worried the caps weren't cold enough because I couldn't feel them like the first time, but they were in fact colder based on the themo gun.
I use the peas on my fingers and toes because of the Taxotere. Also purchased NailTek to help protect the nails during this process too. I haven't had any issues as of yet.
I only have 2 treatments to go and can see the light at the end of the tunnel!
I might have to ask about Latisse because it would seem crazy to keep the hair on my head and lose my brows and eyelashes!
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