Cold Caps Users Past and Present, to Save Hair
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Julia and Ang7, I agree as well. Frank is a wonderful person who truly cares. When I emailed the company just 1 year ago, Frank called me personally. I spoke with him several times by phone as well as through email. I think PCCs have since caught on like wildfire, and he simply cannot keep up.
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I would love to have talked to Frank about my questions. Unfortunately, I never received a reply after contacting him. I'm sure that he cares, but that doesn't remove the fact that the company is very happy to take money from customers (and bill promptly), while at the same time giving very spotty customer service.
I am very happy to have used the caps and would recommend them to others enthusiastically, but it's okay to be honest and candid about the lack of info and customer service. I think that new users really need to get the straight story so that if and when their questions are not answered, they don't feel like they're the only one.
I don't think that it will be possible for Frank to get FDA approval without a some very thorough testing and research to show the FDA. It would be wonderful to see that done.
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Amen Julia. When I first met Frank 2 years ago (he was visiting the US just before Hope Rugo's clinical study began at UCSF, and the day before my final chemo), I was just awestruck at his kindness, sincere caring for every woman using caps, and his deep, deep devotion to helping people. His personal story is astounding -- he wanted to be a physician like everyone else in his family, but for various reasons ended up becoming a structural engineer. It was while he was working on a pediatric hospital project that he noticed the parents of nephrology patients, going through chemo, dunking their children's heads in ice. He asked why they did that, they said it saved their children's hair during chemo. He began designing the cap for pediatrics, and it took decades -- learning about chemo, about alopecia, about healthy hair, about cancer cocktails, about plastics...his poor and wonderful wife suffered through him modeling many templates of the caps on her head. (She is a saint!) Through a series of events, he adapted the cap for adult cancer patients and it's been the breast cancer patients where it has taken hold. In Europe, the hospitals have deep freezers, and the dry ice method many of us use is just an additional barbarism of our US health 'care' (in addition to the fact that caps aren't used). When I asked him 2 years ago why Penguin didn't have more info written up on the dry ice method of caps, he said it was a liability issue in the US -- the caps aren't really designed for dry ice, but for the freezers. That's why I wrote up my methodology and pointers.
That fall (2010), when Good Morning America did a story on us PCC users, news finally started to spread a little. Penguin was just Frank and his son and a helper, and the manufacturers in California and Florida who would ship the caps in the US. The attention was wonderful but really put pressure on him just due to volume, and because of his deep caring he has tried to keep up with as many people as he can but it isn't physically possible. (When I spoke to him the first time, it was 3 a.m. in England!) He's branched out a little in the US thanks to Gerilyn, but the main daily support remains through patient networks -- I don't think that part of it will *ever* change. I mean, I didn't discuss all of my chemo SEs with my doctors the way I do with my friends also going through chemo. Frank used to be able to phone each and every woman using caps; he had about 6 people at a time (in the US) using them, so it was feasible. The United States is a very large country compared to England, and he isn't personally able to speak with each woman at this point. He really relies on this board and us seasoned users to help answer questions -- that's been the case since page 16 of this board when I joined 2 years ago.
Frank was very clear with me from the get-go that I should expect to shed hair during the process, but probably not enough to require a wig or hat. He was also clear that there were no guarantees. He hadn't had anyone in the US have failure with TC, but he still couldn't guarantee success, just as my doctor couldn't guarantee that doing chemo would mean I'd never get cancer again. He was also very clear that every woman's results will vary, and there are many individual factors including overall health and condition, condition of hair, liver function, and how you respond to chemo in general. Carnivores retain more hair than vegetarians. People with fine, blonde hair shed less than those of us with darker, coarser, thick hair. And, of course, how closely you follow the hair care protocol and whether or not you correctly use the caps. Naturally, the chemo cocktail is a major factor as well -- TC/TCH is the most successful in general, whereas ACT is tougher on your system and on the amount of hair you'll save.
PFC shedding is normal! The length of time it takes varies -- your body is going to take a very long time to detox the chemo long-term and that is as individual as your SEs. Following the hair care protocol, increasing iron intake if appropriate, continuing to hydrate and exercise are the few things you can do. You will still shed hair, it doesn't stop just because your chemo infusions have stopped. There will be a day, however, whether weeks or a few months, where it will stop (usually suddenly) -- that is the point where you can resume warm water washes, frequently, etc.
There has only been one clinical study in the US on the caps, let alone any studies which delve deeper into the variants. That's not Frank's fault nor his responsibility. Studies should always be done independently. He does collect all anecdotal info he receives and continues to fine-tune the hair care protocol (for example, now recommending iron and biotin PFC). The people who should be doing the studies are the research hospitals, but as we all are aware, hardly anybody even knows about the caps at all in the US, still. So that is still work to be done. First, the caps will need to clear FDA approval and get a wide enough audience to be able to do additional qualitative studies. Luckily, new FDA guidelines now allow for European oncological studies to be considered (there is a wealth) and that will speed up the process.
I'd also like hospitals to do some research on why 5% of women on the taxanes never get their hair back at all!
If there are any new users here, I am very happy to email you my writeup of my method, which also includes tons of other pointers. Just PM me with your email address.
ckk, I think it's great that you've started the new thread. I somehow didn't catch that, I'll check it out.
Cheers,
Susan
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soltantio~
Your oncologist might want to take a look at that Taxotears website as I know it has many unhappy young women on it. I agree with you about the warning...my oncologist did not tell me about the taxanes and permanent hair loss until I asked her about it.
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How do we get a clinical trial going? I get calls from the oncologists all the time to talk to their patients about the caps. I wonder if I could start there?
My hair on my head is fine several years post caps. But, my eyebrows, eyelashes and nether regions are a whole 'nother story. The hair either didnt come back, or came back thin to the point of invisible. At least I dont have to shave anymore, but I will spend a fortune in eye pencils! And, I am 45, blonde, thick hair and in decent shape. Lucky me to be in that 5% Holy cow, wonder if I would be bald today if I hadnt been lucky enough to find the cold caps?!0 -
Susan, your story continues to inspire others, and the help that you give is invaluable. Thanks so much for that. I think that it's important to remember that your experience was really nothing like what users are going through now. There is very little support after the caps arrive, and few if any users have access to Frank. I understand that he developed these as a service to all, but their cost is quite steep, and that at a time when patients are already under a tremendous amount of pressure of all types - emotional, physical, financial. How else can PCC improve their visibility and customer satisfaction, if not through feedback from their customers?
I know that there is one major oncology center that has tried to reach out to PCC to get testing going, but has received no reply.
I'll leave the discussion at that. If there are any women who are using the caps and feel that they have gotten little support from the company with issues or questions, please know that you are not alone, and that women here will help as much as they can.
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ckk: I had one phone call from Penguin, and was referred to this list (then 16 pages long) and past users for all my support. There wasn't even a booklet to accompany. I too would love for there to be more done, but that's why I volunteer so much time helping. There were no US reps back then at all. Iy was definitely not more support than now. Sorry if that was confusing.
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Susan, I hope that you don't misconstrue my comments as criticism. Your write up last Fall was a tremendous help, and it made me feel empowered and upbeat at a time when there was little to feel good about! It was far more help than anything received from the company, and I thank you.
That's the point, it isn't the job of volunteers to do the work of the company. Frank should be hiring people to make proper brochures and information pamphlets, putting people on staff to answer questions in a timely and accurate manner, and going around to oncology centers in the U.S. to talk to doctors to get the word out so that we don't receive so much resistance when we're trying to save our hair. He would have far more clout as owner of the company than we would as vulnerable patients. Maybe one of us should put together a business plan!
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I have much to say about this subject. So much in fact I have to post it at a later time...
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Anybody know what the protocol is for cocktails in the six weeks post chemo? I know you're supposed to keep your liver clean but I have a wedding two weeks after my last chemo so i'm wondering.
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Anybody know what the protocol is for cocktails in the six weeks post chemo? I know you're supposed to keep your liver clean but I have a wedding two weeks after my last chemo so i'm wondering.
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hbb, I don't remember how long after chemo was over that I even felt like having a drink, but once I starting feeling good again, I drank whenever I pleased, with no ill effects.
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No one gave me any rules. I had a glass of wine or two during chemo but it tasted nasty. I just waited until I thought it would taste good again and then I had some.
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I had some wine last Sunday and I couldn't stop being sick and it felt like chemo all over again. I have decided not to drink as I can't stand being ill.
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Hey girls, I just wanted to ask if anyone would be willing to share photos of their hair success with PCCs on my blog. I blog just because it was therapeutic for me when I was diagnosed. I never really look at the stats on my blog, but recently I did and the most read posts are the one's that are about PCCs! I have my photos on my blog of my hair and postings about my journey. It seems there are so many people interested in reading about PCC's but not much information. I would love to share more success stories and photos of anyone willing to be a part of it. I just want to help others that want to explore PCCs and realize they have choice. If you are interested, let me know by private message. If you don't want your face out there, I can block it out of the photo easily so it can't be seen. No pressure, but if anyone is interested, contact me. As mentioned a few posts back, there are few resources about PCC's.
I hope you all have a GOOD hair day:)
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I had my last T/C infusion a few days ago and am out of it right now. I'll post when my head clears, but basically I am very happy to have used PCCs. I have shed a lot, but I do still have my hair and I am grateful for it. I look in a mirror or see my reflection somewhere and having hair makes me feel so good. If I were bald, I know I would feel so sick and defeated.
I just sent my caps back and they were delivered back to Geralyn this afternoon, according to my FEDEX tracking.
I had my chemo at NY Hospital's Weill Cornell Breast Center where about 38 women have used Cold Caps and they have a freezer from the Rapunzel Project. As I understand it, T/C and TCH users do better than those on ATC. The center is doing a private study of their own and I believe will be sharing the information gathered with other medical professionals at seminars. Pictures were taken of my hair before I started chemo and before each infusion to show any change - I have shed a lot. Another picture will be taken about a month after this last treatment.
I met two women there who had finsihed recently, both TCH users, and both had glorious heads of long, thick wavy hair. One probably was in her late 30's or very early 40's and the other in her early 60's. Both said they had thinned out a lot, but I would never have been able to tell they had lost anything at all as they both seemed to have very full heads of hair. They clearly must have had very thick hair to start with. They were thrilled with their results.
I am in my early 60's with long straight blonde hair which I lighten myself at home. It was probably medium thick to start with, hard to judge. Today it's a mess, as according to protocol, I haven't been able to wash it since last Saturday. I get to wash it tomorrow. I did not shed much during my last shampoo, so tomorrow will be interesting.
I may be shedding more because I colored my hair six days before my first treatment, which is not supposed to be done - my bad.
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Hortense - huge congrats on being done!!! That is so cool you are part of a research study. Very, very cool.
Speaking of research studies, I can't recall if this was posted or not, but here is a recent one done on cold caps:
Scalp Cooling Protects Against Chemotherapy-Induced Alopecia
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Hortense, congrats on bring done! I can't wait to be in your boat!!!!!!
Dance, I brought the article you sent me the link to to my onc appt and he was all for lowering my prescribed regimen to 4. I've never been so happy! That means i'm officially half done. I have barely been shedding lately and my 3rd chemo is in exactly a week so these days i'm feeling optimistic.
I would be interested in setting peoples pics, and I'd love to compare the drugs with the pics.0 -
There are so many pages on this thread. Can someone direct me to the instructions that were written and posted here for using the cold caps please?
Thank you!
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hbb - so happy happy for you!!!!!
Has anyone ever used those little paint-on grey touch up sticks on their hair after cold caps? They wash out, so I was thinking they probably are very gentle on the hair. Sure would make me feel better about going out and about for the next 6 months!
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stayinhappy, Private message sebm9. She has a detailed write up that she will email you. Also, makingway created a website for tips etc. She posted a link to it a few pages back.0
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stayinhappy, there is also a thread called "Cold Cap Usage Tips" that has user experience helpful tips whren using the caps:
http://community.breastcancer.org/forum/6/topic/786991?page=1
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I used Colormark for root touch ups all during chemo and after until I could color my hair.
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I have coloured my hair again with henna and it looks good and no problems
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I tried the cover-up sticks yesterday - they work great! Makes me feel much more presentable to the world.
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It great we can do a little cover up to make us smile.
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So true Ali! It really makes a huge difference in how I feel.
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I will begin chemo tomorrow. Taxotere/Cytoxan. I am going to try the Elasto-Gel Chemo Helmets. I will let you all know how it goes. I sure pray I get to keep my hair! Thanks to all of you for the comments on this board, and sebm9, for your write up. I know it applies to the Penguin caps, but still so very helpful!
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Welcome stayinhappy - wishing you all the best - keep up posted!
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stayinhappy, Just make sure you follow the Penguin protocol.
I'll say a prayer for you too
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