Cold Caps Users Past and Present, to Save Hair
Comments
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Any other Elasto Gel users out there than can share details of your experience with the caps?
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stayinhappy-ArleneA used Elasto Gels, haven't seen her on here for a while, but you could PM her. My advice would be to follow the Penguin protocol with any type of cold caps. It is very strict and specific, but who wants to take any chances when it comes to keeping their hair?
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Thanks Dance! Gotta love those caps.
Can't believe you are done with treatments already. Seems like the other day when you were starting :-)
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i am using the PCC with AC. I did 4 AC and have finished 4 Taxol. I have probably have lost 75% of my hair. It is a very individual thing. I wear a wig to work, but just a hat when running errands. I pray the shedding stops and some new growth starts!
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Even tho I didn't use cold caps, lost 90% of hair with AC. It started to grow back at taxol# 2 and at taxol #6 started shedding about 50 hairs a day esp on top. I still have a lot esp sides and back and some is still growing. One taxol left.
Good luck with regrowth!0 -
victorious, your hair looks super!
Nkb and lbrewer, I'll say a prayer for quick regrowth!
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For those who want to help spread the word about cold caps, I suggest posting about them on websites you might frequent that also have health forums. I just started a thread in the Health forum of a small regional website I go to and titled it " Cancer - Saving Your Hair During Chemo" and in a few days it has had almost 300 people look at it. Almost immediately I got a response thanking me for posting the information.
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I am trying to decide which cold caps to use, Penguin or Elasto-gel. They seem to use the same protocol, but Penguin has velcro flaps and you rent them, whereas with the elasto-gel, you buy them. Does anybody know any pros or cons to compare these? Thanks so much!
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Hi! Can anyone tell me how soon after chemo was over that they cut their hair or colored (with vegetable dye, of course)? I'm getting the itch to do something, but I am only 2 months treatment (with little to no shedding).
Thanks
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Grandmother, I do NOT recommend Elasto-gels. They do not get cold enough, nor do they stay cold enough, to be successful. A few women have had complete success, but that is unusual. If you send me your email I can send my writeup about my PCC experience . I am one of the early US users and kept 90% of my hair through 4TC. I've subsequently coached hundreds of women in using PCCs. I was the first at my cancer center to use them; now all of my doctors recommend them, even my dentist! All of the MOs in my doctors group also now recommend them to their patients-- what a difference 2 years makes!
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Hi all,
New article on Yahoo:
New Cold Cap Helps Chemo Patients Keep Their Hair
I started a new thread with this article, just to add to helping increase awareness.
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Great article Dance!
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Anybody out there color their hair a week early?? (3 month mark) We have a Light the Night event the week before my 12 week point & I would love to hide the 3" of brown roots.
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Hey, I thought it was 6 months before you could color, not 3 months???
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I think it is 3 months for Veg dye.
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Oh, I didn't realize that's what you were talking about reneerodin - thanks!
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I used a temporary hair color about 2 or so months after chemo I believe. I used the Clariol Beautiful Collection. I got it at Sally's Beauty Supply. It lasted a few weeks. It did not completely cover all the gray but it toned it down a ton so it was not noticeable.
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mdg, had you stopped shedding by the time you used that color? I'm still shedding a lot and just not sure if I can do the temporary color thing or not. Those dang grays!
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Hi ladies ...I'm about 18 months PFC. My hair is great...:-)..... Just wanted to say I have never regretted using the caps....I shed for over 5 months PFC..and lost probably 30% of my hair...I did cold washes that entire time and washed only every 3-4 days.... I thought I'd never stop shedding and my hair would slowly get too thin....BUT it never did.
I did use the Clariol Beautiful no ammonia no peroxide non permanent hair dye 5 weeks PFC... I was going to Vegas and wanted my roots cleaned up ....no ill effects....did it every 3-4 weeks until 9 months PFC.....
Miss you ladies, glad to see so many familiar names and new ones too....the journey...and it is a journey...is so worth it!!0 -
I don't come here real often anymore but Susan, I must jump in here in defense of the ElastoGels. I don't think there are enough EG users here to really determine their success rate. The few of us here who used the EGs had success. There are many here who used the PCCs and still lost their hair. Did I lose hair? Yes, and a good amount but I repeat that I never needed a wig or scarf and my hair is wild and crazy now. My avatar is in March 2012(after I had chopped my hair off really short) with my grandbaby in Cali (last chemo in June 2011) and it is almost to my shoulders now (doesn't look like it because I have such crazy curly hair). Whichever cold cap works for an individual, financially or otherwise, I say go for it because something is WAY better than nothing. The cold really stimulates hair growth and brings your hair back to normal much quicker. The thing with the EGs is that you must change them much sooner than the PCCs...I changed (hubby did) apx every 18 minutes and then put it back in the dry ice. I had them all numbered so I'd know which one was the coldest/oldest so I didn't get confused and grab one that was warmer. I made sure mine were brand new too...I think that is important.
Susan sent me her PCC write-up and I stuck to it because the EGs really don't come with many instructions. Thank you so much Susan, you are an angel.
Good luck everyone whatever route you take!
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I was still shedding when I did the temporary hair color. I could not wait any longer. I needed to "get in touch with my roots!"
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Hi everyone,
I am frustrated that the large medical foundation/clinic I went to and used PCC's and had success still does not talk about them unless someone asks. I finished TCH and last used PCC's last August and had minimal shedding and hair loss. My hair looks good and even though I have chemo hair underneath and some wierd waves I am VERY HAPPY that I did it. I have shoulder length hair and continue to color it. Sadly, the infusion clinic where I went and used dry ice and did the caps still won't promote them. Why, I asked? Since the FDA hasn't approved it they don't tell upcoming chemo patients about it unless they ask. Also, I hear comments from prospective patients like "aren't they difficult to use, labor intensive and painful". I agree that it does take some planning and can be uncomfortable but are certainly doable and the results make it worth the effort. So many, it seems, are influenced from even investigating cold caps with these negative attitudes and lack of knowledge or willingness to accept it by the medical professionals. I don't get why major medical centers in my area won't change and yet other centers have accepted it. Even when they see success, I get the comment, "well good that it worked for you, "implying I was lucky. But it works for the majority. Ideas welcomed on how to change their attitude.
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Bottom line is the won't make money off it, they think it's just hair and their main concern is treating the cancer not worrying about our hair. I was a pharmaceutical sales rep and a surgical sales rep for years so I have always dealt with physicians, surgeons and nurses. It usually takes clinical data, FDA approval and some type of motivation (financial) for them to listen. If it was a situation where PCC's were sold to MO's offices and they could get paid for people to rent them, it would be a whole different story. I have sold medical equipment/devices to physicians that cost thousands of dollars (capital equipment) that could be used for in office procedures where the physician would get reimbursed by the insurance companies and they were happy to make the $27000 - $40000 investment knowing they would make money. Maybe PCC's should rethink their strategy on how they make money. Right now they have NO ONE promoting the cap usage. If the doc's knew they would make money for their practice, they and their staff WOULD promote it. Trust me....I have years of experience at this! It comes down to also reviewing the potential financial gain by PCC's. If they sell the caps to a doc, after that, they don't make additional money on them unless they need replacements. If they continue to rent the cap to each user, they make money on each user. It comes down to doing an analysis on the potential revenue they could realize by selling the caps to physicians and letting them make money, or making money by the few users that happen to hear about them before doing chemo. Personally, I think they would make more money selling them to physicians. Physicians are greedy....they like to make money. If they were charging the patients directly for the use, they would make some cash and be very happy to promote them.
OK- I am putting my soapbox away now!!!! LOL!
If you can't tell, I am frustrated by this too! It's not fair that people don't even know they have a choice. I can't tell you how many people read my blog and the most highly read posts are ALL about PCC's. It is my small way of getting the word out there. Again - if anyone is interested in sharing photos on my blog to help women see for themselves that they work, PM me. You can use a back of the head shot if you don't want a face photo or we can block out your face on the photos if you like. People ARE looking for solutions to hair loss with chemo!
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Soltanito - Helpers charge $750 - $1000 a day in NYC, which I think is a lot, especially on top of renting the caps for 2 1/2 to 3 months. I'm not sure how much I was charged bu PCC yet, as I am waiting for an invoice. I do know that I paid $3000 in all for my helper. I liked her a lot, but I ended up with two frostbite bald spots from the caps being too cold the first time which was too bad. On the other hand, I still have hair.
I'm afraid doctors will not buy in until the FDA gives its approval. Penguin needs to apply for that. I wonder if it has? Has anyone asked Geralyn? She might know.
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No, I did not ice in between. I did bring two caps home after the first time, but could not bring myself to use them. I did not bring any home after the next sessions.
If you are icing in between, I salute you!
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Hi serenitywisdom, In our area, we have many choices of institutions to go to, for cancer treatment. Unfortunately, we are big business -- those of us who have insurance, that is. Other centers in the area are front and center with PCCs and they will, rightfully, get the business. They have the vision and leadership to be open to innovation and, moreover, for basing their care in the whole patient. I didn't want to move all my treatment to UCSF, so I put together a care team (all with research affiliations with UCSF) at my cancer center. [UCSF is ground zero for breast cancer treatment and research in the US.] My team was truly supportive, if unconvinced at first. It was more convenient for me to be able to remain in the east bay, especially when I had daily rads. Because I had such incredible success, word spread quickly here; now all of my docs recommend the caps, even the other MOs in my MO's group. Your center has definitely lagged behind. Though it has a good reputation, in reality, it does not keep up when it comes to innovation. (I've coached several women from there, but they found out about caps independently and each had to talk their way into using them.) Very frustrating, and so unfair to the women going through treatment! Thank you for helping spread the word.
Hortense: the wheels have already been in motion for over 2 years for FDA approval. A certain amount of published research is required for FDA approval, including US studies. [The laws recently changed so that FDA approval can also include European publications -- this has greatly sped up the process.] UCSF completed one of the clincial studies, and that is now in the analysis and publication stage.
Don't blame PCCs for the slowness of the FDA approval system! This kind of stuff is unique to our very broken, profit-based, pharma-based US health "care" system.
Susan
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Quite a few hospitals are behind the times, even ones with big names and big reputations.
My radiation oncologist at one of those remembered me from a visit I had had with her before chemo, and after looking at me closely said "your hair has thinned a bit". I told her I had used cold caps during chemotherapy which was why I wasn't bald, and that I had switched hospitals away from her's to be able to use them. Of course she must have known I'd use cold caps as she had all of my information from the other hospital in her file.
She didn't comment on the cold caps, but it registered. I was sure to tell her that there were four or five other women from her hospital who had all called Penguin when I did to inquire about using cold caps. I said I did not know what they did ultimately, but I chose to switch doctors and hospitals to be able to use them. (You are right about us being a big business. And, I took mine elsewhere!)
Then she asked if I had iced my nails, which I had. She looked at them and was impressed that they were fine. She wanted to know if my toe nails were also. I told her yes, under their bright polish, because I had iced them too.
Maybe, slowly, doctors at these backward, rather self satisfied hospitals will see the light and move to routinely allowing icing of nails and eventually even, gulp... Cold Caps.
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Great post mdg!
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Special thanks to Susan (sebm9) for sending me her write-up on her experience using the caps!
I went to see my onc last week armed with a thick file of studies & other info on cold cap therapy. (Thanks to all who contributed to that!) I asked Onc if he was familiar with it and he said he was, that they had used it where he was before, and that it did NOT work. I asked him when that was, and he said 20 YEARS AGO! I then politely recited the little speech I had prepared summarizing the main points in my file. He kept looking at the stack of papers in my hand, as if thinking, "Surely she doesn't expect me to actually read all that stuff." Then I asked if he would have any objections to my trying the caps at his facility, and he said, "Of course not"! Then he added that if the caps worked for me, he would start recommending them to other patients.
That was one hurdle over with, so this weekend I ordered the Penquin caps, and they were shipped out to me today, to be received Wed. My next chemo is Thursday, so I should be set up by then. I have no idea how this will work for me, since I've already lost my hair, but I'm willing to try just about anything to have hair again. My husband is being very supportive also, and that's a big plus, so we'll just see how it goes.
Peachy
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Peachy...good for you! I hope they work for you too! I can tell you that the hair I kept continued to grow all through chemo. My gray roots where 1 1/2 inches long by the end of chemo. Keep us posted!
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