Cold Caps Users Past and Present, to Save Hair
Comments
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Just want to thank everyone for their support and for being there to help me navigate my way through this process. When you decide to do the caps, your only thinking about the regimen. I never imagined all the other things that come up, from communication issues with the hospital and nurses to people's attitudes about the caps. I feel like some people think it's a confidence issue or lack of. I think that's ridiculous. Whatever decision someone chooses to make about their hair, I would not judge them for that. I've had people say I would never do that, it's too much trouble and if I lost my hair I would not get a wig. I really felt like some people close to me were judging me for the decision to use the caps.
It upset me and I thought, I'm fighting cancer and what I chose to do with my hair does not diminish that.
Luckyjnj...I laugh everytime I think of your response to the nurse who asked you if it was worth it.
Susan...Good luck today!!! Please tell us how it went.
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PortisK...I am in Atlanta and successfully used the Penguins a few years ago with tch. I think my name must be at the top of a referral list for PCC as I get calls about every few weeks about my experience. I was in a clinical trial at Peachtree Hematology with Dr Henderson, his nurse was Anne. This time a year ago they had not heard of the caps, but I gave them a schoolin', lol! So, I am glad its trickling on down. Once you get the caps, I'd be happy to meet and do a demo. Like Ang7 said, my husband takes pride also in his cap skills. We have shown a number of folks the ropes.
And, I know this is probably penguin frowned upon...but I treated my hair pretty much business as usual all throughout. I washed it once a week and even HIGHLIGHTED it with foils with no issues. I just did the highlights well away from infusion day.
I consider the caps a HUGE part of my healing process. Frank was one of the first people I spoke with after all the biopsies were over. I will never forget that first call...he called early in the morning when I was out Christmas shopping for my kids. I was wondering how many more holidays I had. That man singlehandedly eased my soul. What an angel.0 -
I'm on Day 21 and holding my breath... from what I've read I hair loss would be between day 14-21 for my protocol
I think I'll breath a bit easier when I wake up tomorrorw morning
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geewhiz~
I am right there with ya. Frank called me very late at night and it was right at the time when I was feeling so down. I wonder if he knows how much he has helped in the healing process?
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Thanks, mdg. What dose/how many per day of each did you take? I don't know how much to take.
Sounds like Frank was more involved back when you guys were using the caps. I've had no contact with him (he didn't respond to email) and very little contact with Geralyn as I've gone through this process. I've been disappointed. I've felt like I've been alone and on my own, and I have to say if it wasn't for this group, I would of been lost.
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LeesaAnn~
That makes me sad. I wonder if he got so caught up in the "retail" part of it that he didn't make time for the patients like he used to.
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geewhiz, Your post just took me back. I had never heard of cold cap therapy when my daughter found something online. Frank called me the same day I inquired on the PCC website. I felt hope for the first time since hearing the dreaded news. I too, felt like he was an angel.
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Geewhiz, I'm so happy to read about your regimen with PCC. I'm almost afraid to scratch my head lest I go bald. I'm not about to blow dry or anything but it is comforting to know that I have a little leeway.0
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tc9876, Your comment made me laugh! I was right there with you. At first, I was afraid to do anything, I just knew I would do something and ruin it. After a couple of treatments, I started feeling more confident. It also really helped hearing from users who were finished.
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KCD, hang in there. You are doing great. You would definitely have a sign by day 21 if things weren't going well.
Geewhiz: I love it..."penguin frowned upon". I can totally relate. I've had a time or two that I've been so desperate that I had to do something "penguin frowned upon". It is so hard not being able to style my hair. I sometimes feel embarrassed by the way my hair looks. But I will take this any day over not having any hair.
So far I've been very pleased with Penguin cold caps. My hair is still hanging in there after 4ACs and 2 Ts. Praying I will make through two more Ts without a hitch. I haven't had the opportunity to talk to Frank, but there's this wonderful lady in my area that is a past penguin user (a pioneer) who has helped me with every infusion. So she's like my Frank. Maybe Frank is spread thin and now has to rely on other surrogates to provide support to patients.
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Like LeesaAnn, I too have had less than optimal support from PCC. I have had no contact at all with Frank, and my questions have not been answered promptly, if at all, by Geralyn. Now that I know that PCC is in the process of rolling out the new machines, I think that I understand why - not enough PCC folks are focused on customer service. In addition, I have found it very frustrating that there is conflicting information about very important things on the PCC web site, materials that are sent out, and correspondence with the company. I am very glad that I've had success with the caps, but as was mentioned above, it is more due to the support that I have had here.
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I had excellent service from Geralyn. I never dealt with Frank. Geralyn contnued to call me and check in, She also got back to me quickly. I do know they were super busy..they are a very small operation.
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I agree, Geralyn has been very responsive, particulary quick with email response.
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how did you guys convice the onc to let you try them?
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I'm a new cold cap user, my first infusion was March 2. I have had no problems getting in touch with Geralyn either by phone or email.
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how do you freeze the caps during treqatment
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ibrewer...I just asked, and the response I got was you can do it, but they don't work. We tried that 10 - 15 years ago and we stopped because they don't work. I'm not quite sure what was meant by that (the tone was so negative, I didn't really care to find out) maybe they did some kind of clinical trial there years ago.
I have only had my first chemo, so too early to tell anything but I'm hoping for the same success most of the ladies on this site have had
Keeping fingers crossed!0 -
ibrewer...they are packed in dry ice in ice chests, unless the facility you use has a biomedical feezer.
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Many med oncs will tell you they don't work. I used them and have a full head of hair. I sat in front of a med onc at an NCI a month or two after completing chem with my hair and she said they don't work and I let her look at my hair and feel it and she said "well you are the only person they worked for". Most med oncs don't care and have the "it's just hair attitude" and are uneducated about them. Do not be surprised if your onc does not get excited about it at all. Many women here have faced that with their docs. Some docs yave become supporters after seeing patients have sucessful results.
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do you take all the freezers with you to treatment
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when i mentioned them to my onc at the time of my first chemo she said no becasue of scalp mets. I didn't pursue it but has any onc refused to treat a patient becasue they want to try them?
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has anyone tried the ones from advanced cold cap services?
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TC9876,
Did you experience shedding post chemo? How long did it last? Going on week 9 and it's getting pretty annoying - thanks Lucky
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I have never spoken to Frank - but I have received excellent support from Geralyn - she has always called and emailed me back within 24 hours or less - she's even returned my emails at 10:00 at night. I find their blogs less than helpful - there's not anywhere near the traffic on theirs as there is on this one.
Lucky
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lbrewer~
My onc. researched the Penguin Cold Caps extensively for me before she agreed to have me use them. She printed tons of research from Europe and was in agreement with me to use them after that.
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Has anyone heard of cold cap therapy with ovarian cancer? I was told it has not really been studied but plan to still use cold caps in the upcoming weeks when I start my chemo. I have been in contact with Frank, the inventor of the cold caps, and he seems hopeful. I will have BEP chemo which is bleomycin, etoposide, platinum every day M-F, 5 days in a row, and will repeat this 4 times with 2 week breaks in between, 20 times total with the cold caps. Has anyone else used the cold caps multiple days in a row? I am 20 years old and desperatly hoping to keep my hair.0
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Has anyone heard of cold cap therapy with ovarian cancer? I was told it has not really been studied but plan to still use cold caps in the upcoming weeks when I start my chemo. I have been in contact with Frank, the inventor of the cold caps, and he seems hopeful. I will have BEP chemo which is bleomycin, etoposide, platinum every day M-F, 5 days in a row, and will repeat this 4 times with 2 week breaks in between, 20 times total with the cold caps. Has anyone else used the cold caps multiple days in a row? I am 20 years old and desperatly hoping to keep my hair.
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hugs kgg!!!!! I hope they work for you !!!!
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kgg, Frank knows his stuff. Hugs to you!
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lbrewer, go back to page 186, there were a lot of comments on Advance Caps versus Penguin Caps.
If you use dry ice, yes, you take coolers with dry ice with you each time. If your facility has a freezer, you leave the caps there.
I have seen posts on other topics here where an onc was concerned about scalp mets. If your onc does a little research, he/she will find that the caps are safe. I am sure no onc would refuse treatment if you decide to use the caps. If they did, I would go elsewhere.
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