Cold Caps Users Past and Present, to Save Hair
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Hey all~
I have been resubmitting my script. for Hair Prosthesis and an invoice that Frank had made for me for a long time now. BCBS told me that it was being handled by the International Blue Cross Blue Shield so that is who I have been dealing with. I used the Penguin Cold Caps in 2009/2010 and that is the date that I have on all my information that I submitted. Not sure what to do next.
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Peachy - do call Geralyn who handles Penguin Cold caps to ask her directly if what you are proposing will work:
Geralyn M. Pewarchie
Agent for The Penguin Cold Caps
Phone: 810-359-5257
geralyn@talkamerica.netAlso, be sure your hospital will allow them. I had to switch doctors and hospitals to be able to use them as my orginal hospital did not allow them. Nothing to do with medical reasons, it just didn't want to deal with the "big proceedure", as it called it, of coolers, changing cold caps and the extra helpers.
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Hi ladies....did anyone notice anymore shedding once the tamoxifen kicked in? My onc says its not a problem but then again she is one of those who said you can use the caps.....but you are on your own cuz "they don't work"....so I known she is PCC ignorant and don't take her word as expert on things "hairy".
I also wonder how long most people continue to shed? I know we are all different but 12 weeks after chemo seems a bit toooooo long.0 -
Janeoz - I'm almost 8 weeks PFC, still shedding. It started getting worse for me when I had to start Diflucan 2 weeks ago for ongoing thrush issues. Diflucan can cause hair thinning. I started Tamoxifen 1 week ago, so I cannot tell if part of it is due to Tamox or not. Plus I'm on Herceptin, which can cause hair thinning. So three drugs I am on can cause hair thinning...it's a wonder I have hair at all. LOL
Hang in there. 12 weeks does seem like a long time, I was hoping I'd be done by then, but I think I've heard some say they've shed up to 4 months PFC.
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Janeoz, I am 8 weeks PFC and on Tamoxifen for 3 weeks. My shedding has significantly decreased and is almost at pre-chemo level. However, I lost so much during chemo (using PCC machine) that I wonder if the reduced shedding is because I have so little left. On a side note, my eyelashes just fell out. I'm wearing falsies now.
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I am using the Elasto Gel helmets. I had my first chemo (Taxotere/Cytoxan) on July 18th. I am shedding a lot. Not chunks, but when I gather it up each morning a loose ball about the size of a golf ball on good days, or a billiard/pool ball on heavier days. It is stressful to see it thinning so, but better than seeing my bald head. I plan to shorten the time I am wearing the hats (down to 15 minutes at a time) for my next round of chemo (this Thursday). They warm up rather quickly, even though I have cooled them to the Penguin recommended temps. I am following the PCC protocol.
I've read enough to know that I would have the shedding, and loose a good bit of hair. But, I am wondering -
Those of you past chemo, how much of your hair would you say you lost? 1/3, 1/2, 2/3? And when, treatment time wise wise, was your hair the thinnest?
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You are almost three weeks past your first treatment and should be starting to shed about now. Mine started slowly about that time, then sped up for two weeks before settling down to a regular slow shed. I am four weeks post my final T/C chemo treatment and have lost about 35% of my hair, but still have full coverage as you can see from my avatar. I am also still slowly losing hair regularly, but figure some of it would be normal loss and some from chemo. Remember, we all start out with about 100,000 hairs on out head which is quite a lot.
I took part in a cold cap study at my hospital and this is what I sent them a few days ago along with a questionaire I had to fill out:
"I thought I would let whoever is involved in the study at Weill Cornell know that I have been doing my own study to see how much hair I would lose while washing my hair, beginning two shampoos before my first T/C chemo treatment.
I started by gathering all the hair I lost during two shampoos before I began chemo to use as a reference for what was normal shedding. Having them to refer to helped me not panic when I began to shed in earnest. I realized that it really was not that much, especially when compared to how much hair was left on my head. Also, keeping the hair from each shampoo gave me reassuring evidence of how quickly the shedding tapered off.
My biggest hair losses were on days 4 and 7 after my second treatment, so at four weeks after I began chemotherapy. I am still shedding during shampoos, but it is getting closer to what I usually lost pre chemo when compared to my two samples. Each sample is dated and in a clear plastic bag. It's been interesting. "Good luck and stay positive!0 -
I used the caps 50 min prior to starting chemo, and 4 hours after it was finished. My order was Taxotere, Carboplatin, Herceptin. I started counting the 4 hours after Carbo was done, so the Herceptin was part of the 4 hours.
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Hortense, wish I had kept track of my hair in baggies like you did!
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I am scheduled to begin chemo next week and have been reading about the cold caps. I asked my nurse at the MO office, but she has never heard of them. She is interested though and wants me to bring the info in on Thursday when I go for an educational appt with her. This sounds like a great thing. Sure do hope it continues to work for you!
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I would say I lost about 30% of my hair if I had to guess but I have photos and you can see for yourself that it looked completely "normal" to anyone else but me. I have photos in my blog all through chemo and after.
Grandmother - don't be surprised if your MO office tells you "they don't work" or won't support you while using them..most of us have heard that. Good luck! Post any questions you have!!
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Grandmother- Good luck with the cold caps! I am so glad I used them. Keeping my hair changed my entire outlook.
Stayinhappy- I was really fortunate. I only lost a tiny strip of hair above my ears where the caps didn't quite reach. I did follow protocol and my helpers were super.
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I am just wondering if cold caps work if your chemo regimen is A/C. ( adriamycin also known as doxorubicin). Seems like most people who mention their chemo regimen had cytoxin and taxotere.
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Nkb- Although AC is harsher, they do work with that regimen. Hopefully some AC cold cappers will chime in.
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soltantio - yeah, 12 hours would be brutal! Not necessary to use cold caps during Herceptin at all.
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soltantio, Don't worry about not using caps during Herceptin. The only advantage of having Herceptin last is just that it counts toward your 4 hours post chemo cap time. I just finished my year of Herceptin. I did not lose any hair while on Herceptin alone.
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Nkb-The caps do work with the a/c regimen!! I am 2 months pfc with a full head of hair! It was the best decision I ever made. I'd be happy to share more of the details with you.
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Mishap- thanks. Too late for me, the hair all fell out, I had heard about cold caps, but, that they didn't work with adriamycin I wanted to know in case other people asked me. I will never have adriamycin again in my life- too hard on the heart, but if God forbid I ever need hair destroying chemo again, I would do the cold caps in a minute. The hair loss issue has been huge for me.
I also heard from a chemo nurse that it costs $5000. And was incredibly labor intensive. Glad to hear that it is doable.
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Nkb, I am so sorry you were misinformed, and disgusted that your nurse would tell you those things when she obviously did not do any research on the subject. The caps are labor intensive, but also a great distraction during chemo. As far as the cost, it was around $1600 for Penguin Cold Caps. I am sure you will not find one PCC user who would say the caps weren't worth every penny and every bit of labor involved. Unfortunately, there are many in the medical profession who are ignorant about cold cap therapy.
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PCC's were soooo worth the money and extra labor etc.
I actually went back to the large hospital in my area that refused to let me use the Caps. The Dr. actually said he thought it "was a fluke" that my hair did not fall out.
Yeah, guess everyone on this site is a fluke.
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yizbieta: so great to hear from you, you sound great!
hortense: your hair looks incredible! wow.
Peachy: I read your PM before I saw these posts. I'll send you my writeup re: dry ice. I'm not sure about your particular chemo cocktail, but PCCs will help protect the hair follicles even if chemo (and hair loss) have already occurred. When I was just finishing my chemo 2 years ago, Frank Fronda (the PCC inventor) told me about a patient who learned of caps after she'd had her first of TC infusions and had lost all of her hair. She used caps (I think used a silk scarf on her bald head to protect her, and a slightly lower temp) and her hair regrew while she had her subsequent treatments. She went bald after her first chemo, but finished chemo with a full head of hair. It was at about this point that Frank began recommending that women could wear the caps -- at regular household freezer temp, rather than at deep-freeze temps of infusion day -- inbetween infusions for added protection and hair growth stimulation.
If caps will work with your chemo, I'd consider contacting the Rapunzel Project for donation of a freezer to your cancer center. Or, consider purchasing one outright (a few thousand dollars when I last checked).
Susan
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Dancetrance.....i just don't want to be the record holder for longest shedder......or one who eventually lost it all....so disheartening to see it still all over clothes...am trying to "hang in there" ...only wish my hair would get that message.....
Did anyone use anything on top of their heads to help with growth or scalp health? Or just stuck with the shampoo regime?0 -
Nkb,
I had AC - Taxol. I did very well with AC until 4 weeks past my last infususion. I lost about 40% total but everyone in the office can't tell much of a difference. I feel it is thin but it is better than wearing a wig for six months or longer. Take a trip to the local wig shop & try one on before deciding. I bought a turbin just in case but haven't used it yet.
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I'd like to chime in on the A/C issue. Yes, Penguin Cold Caps do work with the ACT regimen. I am 16 weeks PFC and still have hair! I had 4 rounds of A/C and 4 rounds of Taxotere. While the AC was harsher on my hair than Taxotere, I still kept my hair. I would say I lost 30-40% of my hair, but no bald spots and no one can tell that I just finished chemo. My hair is just thinner than it was before. So please, do not believe when they say the caps do not work with Adriamycin. If you follow the Penguin Cold Cap Protocol, you have a good chance of being successful. Doing the caps was one of the best decisions I made during this entire ordeal. It is worth the money and the labor!
Here is a photo of my hair 16 weeks PFC (thanks Hortense for the instructions on how to post photos).
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How many weeks did you shed for?
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Thanks to those who responded to me about using cold caps after having lost my hair and continuing on Abraxane, which is a newer form of Taxol. I'm in my 4th month of treatment now, and it has been a fairly easy regimen for me .... except for the hair loss. PCC works with Abraxane; it's on the drug list on their website.
I did speak with Frank (and Geralyn)...really nice folks. Frank believes CC will allow me to regrow hair while undergoing chemo...and it does look like I will be on this drug, or another, for a long time.
I've been trying to contact my onc, but he's away. His PA sent me a message yesterday saying their group has never used cc therapy because there's never been any proof that it works (no studies). I'm to see onc tomorrow (Thurs), so I've been gathering info from web to take to him. If anyone has any studies or links that might help me convince him, please let me know. I'm so afraid he will refuse to let me do it, and his group is the only game in town (Athens, Ga.) Although I guess maybe he couldn't stop me.
Peachy
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I had most of my shedding during treatment. After the 3rd and 4th AC, I shed the most. By the 3rd and 4th Taxotere, I had minimal shedding. My post chemo shedding has been minimal. Everyone is different. But I figure since I shed so much early on, my hair had mercy on me post chemo.
Also, I never wore a wig. Only hats on bad hair days.
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Peachy I have some links to studies on my blog. I also have photos of my results. If any others who have had success with PCCs would be willing to share photos on my blog please let me know. I just want there to be some proof out there that PCCs work. PM me if you would be willing to share photos. I would even block out you face if you want or just use photos of the back of your head.
As far as PFC shedding....mine went on forever. I finished chemo the first week in may and was shedding until September. I still had a full head of hair though. From what I have read most people don't shed that long.0 -
Janeoz...I hear ya!!! Don't think I'm not worried about my continued shedding at 2 months PFC, LOL...hopefully neither of us will be the record holder for length of PFC shedding...
victorious - your hair looks great!
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Peachy- There is a link on Rapunzel Project website to several news reports from all around the country about cold cap therapy. Go to http://www.rapunzelproject.org/ and click News. I will try to post the link directly: http://www.rapunzelproject.org/News.aspx
My onc, as well as the majority of oncs, had not heard of cold cap therapy either. He had no problem with my using them though, and wished me luck. I hope your onc will not have a problem with them, but I would use them with or without his/her blessing. It is your choice.
Best of luck to you!
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