Cold Caps Users Past and Present, to Save Hair
Comments
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Way to go on the GMA segment!
I am the first photo they show holding my hot tea.
I was disappointed that they said insurance does not cover it. I am in the process of working with BCBS and since I heard someone else was reimbursed I am hoping I will be also. I hope hearing that would not keep some people from trying it. I did email GMA and say that some insurances are covering it.
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Good job everyone - just saw the GMA segment out here on the West Coast. Jennifer it was so wonderful that you could get video to the show. None of us are in our "flattering" moments while using the caps -- flattering comes later. I thought they did a good job of helping people understand that the procedure is not appropriate for all cancers. I would have edited the declaration that "insurance does not cover" to something more qualified.
I'm going to try and download the video.
Colleen
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Wonderful!
Thank you all so much for contributing and doing that! I also cried when I watched. I am SO glad they did the segment. Getting the word out!0 -
THANK you guys for getting this out there!!!!! So many people don't know about them! And for some it could really help the process be not quite so frightening/depressing.
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I just got back from my dog obedience lesson and my instructor saw that segment! She liked it a lot. She knew I used the caps and now has a better understanding of what I was talking about.
Colleen
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Just got a call from a friend in Florida and she said the TV said that they are going to air the segment on the cold caps again at 4:00pm on NBC. Not sure what that's all about but I'll watch and find out!0
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Great job DRIM and JENNIFER!! I was so happy they aired the segment, and talked about it for a long time!! Hope I'll be able to download the news, so I can post it on my blog!!
I'm going back to Japan in November, so I'll spread the words about PCC in Japan too! Hoping women with BC in Japan could save their hair!
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I am going to be doing TCH--6 rounds, three weeks apart. I know this is an older post--hope you ladies are all healed and feeling better---any hope for the cold cap in my situation?
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Hi sashasz3~
Yes, I did 6 rounds of TCH, three weeks apart. I only lost a bit of hair right under my ears. With my hair down no one could even tell. I believe the Penguin Cold Caps work very well with the TCH chemo. If you want to look back in some of the posts I did put photos on of my hair...
When do you start?
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Unfortunately, it may be on my right side as well--I have more testing tomorrow--my next surgery will be scheduled, 2 weeks after i start chemo--so maybe within the next month???? I passed this to my oncologist--she is not really into the cap--I will press it on if it has some validity---what do you think this is south jersey--but I have the top docs in my corner---
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Hi girls,
i was asked to let everyone know to please give some positive feed back,apparently the GMA web site where we can go and watch it online, has a lot of negative comments from different people who watched the show about our cold caps,I was asked if we all can please put out own positive thoughts in beings we have been through it and have our own reasons why we did it and yes it does work , thank you.
love Chey
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Hello! Ditah you were awesome! Your hair looks great. Everyone was great. I love that the info is getting out there.
Sashaz3- I sent you a private message
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Drim: you were awesome this morning! I was so proud. You absolutely spoke on behalf of me! I had all of my friends, family and even my hospital colleagues watching. The people who were most impressed were the physicians at my hospital, esp. those who treat chemo patients (oncology and nephrology). It was so fun to see all y'all's pictures! I could name most everyone. I haven't figured how to post a picture; I was in one of the split frame shots, on the right side, with a grey shawl wrapped around me and a big smile on my face. One of these days I'll figure out how to append a photos to these posts...
I did see some of the bizarre comments on the GMA website (especially the "I'm so tired of breast cancer" types of comments, especially from other cancer patients! wow!) so I commented. I know that the story will help get word out, though, and that is the most important thing -- especially as the studies move forward.
I told somebody today, the studies will quantify things in a way that physicians need; we already have quantified and validated that the caps work, in a way that patients need to know. Someday I hope there isn't that gap between physicians and patients. I know many of us here have forced our medical teams to open their eyes and minds to this treatment option, and I was very glad to see some of the once-skeptical physicians and nurses be interviewed this morning. It was nice that GMA recognized that this has been a patient-motored movement. I truly felt like a pioneer. We are!
As it happens, this was my 3-month follow up. What a great way to celebrate!
Cheers to all my sister penguinistas!
Susan
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Ladies~
I really liked the feedback some of you posted on the GMA website. Reading some of posts on there really upset me. Those people have no idea. They are taking the idea of keeping your identity during cancer and turning it into a vanity issue. Thanks for sticking up for us! I had to respond with the post about taxotere and hair possibly never coming back since so many people were saying "It will grow back!"
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I just did my post to GMA -- like Ang7 I found many of the negative posts upsetting -- and good idea to tell people that with Taxoterre your hair might NOT grow back.
Whatever happened to personal choice!
Colleen
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Hey All,
Wonderful job on GMA. Were you contacted by them through BCO? Just a terrific job!!
Congratulations,
Melissa and the BCO Team
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Wow... Seems like the GMA feature is garnering curiosity. 24 hours later and CBC News (the Canadian Broadcast Channel) wants to do a feature on the caps as well... It's going global!
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I would like to see the Canadian story. From what Frank told me, the Canadians have had these available for a long time. The hospitals have freezers and the women getting the treatment have social time as they play cards and visit during the post-infusion period that they are wearing the caps.
Colleen
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I was surprised by the negative comments, too. I think Juju Chang said it best, its about empowerment. So many things are out of your control when you have cancer, but this was something I could do. If your hair doesn't matter to you, then so be it, but if it matters to me, what's wrong with that? How I decide to approach treatment (lumpectomy vs mastectomy, SNB vs ALND, whole breast vs partial breast radiation, etc) is my business. If I am willing to put the effort into the caps, then that should be my choice. As for the scalp mets, there are no studies showing you are at increased risk from using the caps. My doc told me only 1-2% of people who ALREADY have mets get scalp mets, and for it to present as a first area of metastesis is virtually unheard of for breast cancer. The chance of getting luekemia or endometrial cancer from the chemo and tamoxifen is greater. Ok, don't mean to preach to the choir, I am just always amazed how some women have to pull others down. Be grateful we are willing to take the risks you fear! Thank God for other trail blazing women or we wouldn't have so many treatment choices today!
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I have learned "People are different that is what makes our world go round!!" All of us here know we are not our hair,but our hair is part of us and i wanted to keep it!! I did not want to be bald!! I had a mastectomy while the girl next door had a lumpectomy. My sister said she would not have used the caps on her hair but she works like H%## to help me keep mine!!! All in all, im just glad the story got out there!! hehehe, and we all looked HOT in Frank Frondas penguin cold caps!!!
love Chey
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My mom said she couldn't help but notice how HAPPY all the Penguin Cold Cap users looked in their photos...she especially liked the "thumbs up" one at the end.
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Thanks Melissa and the BCO team for the compliments.
The assistant to Frank Fronda, the inventor, asked me if they could use my photo for GMA.
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Ang7: I too have had that comment multiple times: how happy and exuberant and alive we look! Our femininity takes a humongous hit with a breast cancer diagnosis, regardless of our surgery and chemo and radiation paths -- and there is nothing wrong with preserving other parts of our body and identity in the process of battling cancer.
I've been sharing my journey with my friends and my care circle, and one of my friends forwarded the GMA story and link to a local TV producer who wants to follow up. I won't rest until all of the news stations here have covered this story, so that people know about the UCSF study and the option for this therapy. We have one of the highest breast cancer rates in the world, here in the Bay Area.
Melissa and BCO Moderators: thank you for checking in on us, and THANK YOU for providing this invaluable forum. I cannot imagine having gone through Penguin cold cap therapy without the support of the beautiful and strong and inspiring women here. You have made this possible for us, and we in turn can keep breast cancer healthcare providors moving forward in treating us as whole people. My day job is at a children's hospital, and I know how important it is to treat the whole patient, not just the illness.
Cheers,
Susan
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Quick question,
how careful were you when it came to sleeping and day to day care with your hair? i have not been sleeping on a satin pillow case...should i be? also, i follow all the rest, no heat on my hair, baby shampoo watered down cold water...wide tooth comb... and then i use a clip to pull back in a ponytail each day it does not pull on my hair at all and i am not using rubber bands...since i can no longer straighten my frizzy hair....ponytail is the only option! any other day to day tips to follow?? one other question, which might be a dumb question but i honestly dont know, does your hair continue to grow after your infusion day or does your hair not grow at all during the time your doing chemo? i am on weekly taxol 12 weeks then im done....so since the cold cap is making sure the chemo doesnt reach the folical once hte half life is over and the drug is out of your system having not reached your hair does it grow then as normal on non-infusion days? confussed sorry if its a dumb question!!
thanks ladies!
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jpmercy,
Your hair looked great on the video. You seem to be doing all the right things. But here's a couple of tips I got from other fellows PCCers. Some have mentioned that baby shampoo might have a drying effect on the hair. So I used organic, paraben and sulfate free shampoos (Pure Results and Sea Chi were two brands that were recommended to me).
I used a satin pillowcase but I'm really not sure it made any difference. And like you I also have frizzy hair, so I used a tiny amount of defrizzer but made sure to stay away from the roots my hair. I also bought a whole lot of different colored bandanas to "dress up" my hair.
Hope this helps
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I never used a satin pillow case -- and never found hair on my pillow. I just got some Sea Chi Conditioner with Growth Enhancers (something like that) and I like it a great deal. Of course it is very expensive ($55.00 for the bottle). But I do think it is encouraging my hair to start filling in where I had thinning.
Colleen
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Jpmercy and others:
I am on Day 16 post-Taxotere/Cytoxin and still have all my head-hair. Can't wait to go in for my 2nd treatment on Friday and show the nurse--she's a non-believer. Jpmercy--I do have a tip to control frizzy hair, which I also have. I got a wide, loose knit headband and put that down over the sides of my head while the hair is drying--helps smooth it a lot, at least the top 4 or 5". I'm using SLS-free shampoo and the Sea-Chi conditioner also.
Need advice on 2 things: Specifics on how to ice hands and feet w/o buying those expensive Elastogel ice-mitts, and also, anyone find a high-powered non-aluminum deodorant that works? I've tried both Alba and Nature's Gate brands and they just don't cut it for me. THANKS.
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thanks ladies...bridetob....i did the same thing got tons of cloth headbands! Colleen, where did you by that and did you wait until after you were finished iwth chemo to start using it?
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Lucky...same thing with the deodorant nature's gate is not workig that great im so self conscience!!! why do we need the aluminum free deodorant?
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JPmercy, try Thai Crystal. It works great for me.
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