Cold Caps Users Past and Present, to Save Hair
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Thanks Jb!
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Hi Ladies!
I will be 1yr PFC on Halloween. I haven't been on this board much in the past six months since starting a new job after being unemployed for two years. Having my 'normal' hair gave me one less thing to worry about during the interview proceess. Cold capping was hell, but so worth it for me and I feel I should be doing more to help fellow sisters and get the word out. I want to start a website with a link to this board, other resources and cappers blogs (I'll ask permission first) and such and posting here I feel will motivate me to actually do it :-) I've had a graphic created for it that I wanted to share. Looking at it though, I'm going to ask my designer to swaddle this woman with blankets!
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Harrysmum
That sounds like a great idea. I agree I think the lady needs a blanket. May I ask if your hair has returned to its pre-chemo thickness 1 year later?
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Dancetracer, please mention Cold Caps Assistance Project based here in Austin, Texas. http://ccaps.org/ They rent out FREE caps to those in the Austin area, and Patsy will teach you and your helper how to put them on, also for free. She also cuts you a monthly check to subsidize the cost significantly if you are not in the Austin area or her caps are not available. I believe the financial assistance is available for everyone in the US.
This is me, this morning Day 20 after my first treatment! I had some more shedding over the weekend but it's still hanging on and not noticeable to anyone else. I went to a movie with friends Saturday and they had no idea I was shedding! They asked me if I'd started chemo yet! I've lost all my other body hair at this point, except my brows and lashes. I hope they aren't next!
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Aussiegirl,
I always had super-thick hair, so now my hair is just on the thick side of normal. I didn't lose any during cold-capping but I shed like crazy for 4 months PFC, but that could have been related to the Lupron or Tamoxifen, I think.
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Looking good tshire!
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tshire - I already had the CCassistance project in my write up, but those extra details are awesome - will add them - thanks so much!
You look wonderful!
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Ladies... if you are finished with treatment, PLEASE post your pre/during/post pics story on this thread:
https://community.breastcancer.org/forum/6/topic/8...
And, anyone who can think of cappers who are finished, can you please PM them and ask them to post on that page? Thanks!!! We need more than 3 success stories over there!
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Thank you, thank you, thank you to all of the incredible, strong, pioneering and tremendously helpful women on this thread. Especially those of you who keep returning to share advice and encouragement months, and even years after your recovery.
The insight and wisdom you offered helped me and no doubt many, many others to get through the worst of times and remain optimistic throughout treatment. Dancetrancer, Hope49, mdg, pch, Angiel, makingway, Hortense, PatinMN, BBwithBC45, SEBM9 and so many more of you have been more helpful than you will ever know.
I just posted my before and 10 week PFC photos on the before and after thread and am eager to find other ways to get the word out about Cold Caps. Thank you again to all of you who are a part of this wonderful and inspiring thread!
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sassy, thank you so much for posting on the success thread!!!!! Your pics look awesome!
Still working on the FAQ's, peeps...it's a huge project! {drowning in information} LOL
I went to a local breast cancer survivor group last night and mentioned I saved my hair with cold caps. People were like "WHAT????? You did WHAT???" It was hard to say it, as I know the other gals didn't save their hair, but, it is one way to start getting the word out. A local nurse navigator was very interested in knowing more...I am going to be giving her more info via email...just an FYI for those who are interested in spreading the word.
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Hi ladies have any of you used anyhair regrowth products after Chemo? I just had my 7th out of 8 taxols yesterday. So 1 more left to go YAY!! I don't have any regrowth at this point. I'm also doing DD so who knows if I will. Just wondering if anyone used something to help speed up regrowth PFC and if so how long did you wait PFC to start using it. Or did you just let your hair grow back naturally.
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Sassy, great results! Congrats on being 10 weeks PFC.
Great job dancetrancer getting the word out. The more people become educated, the better the outcome will be for patients.
On the same note, I met with a capping discovery panel at my local cancer unit this week. The director of medical oncology had come from a hospital that capped in Atlanta and after some frustration of her own with pushback here, she finally put together a fact-finding group on cold capping at our clinic. I met with them and shared what I felt were all of our stories and frustrations with staff pushback and ignorance. I felt like all of you were in the room with me as I described what it's like to face so much skepticism in the medical community even as the capping was working, even as we all felt so empowered by maintaining our hair. Long story short, the impact of our experiences was very powerful and the board is moving ahead first to educate the medical staff and further to look into the level of material, logistical, and philanthropic support they can offer to patients whose regimens support capping. Dancetrancer's tip sheet will be put to good use there, as I mentioned that she's exerted huge effort to assemble it. I will incorporate Sebm9's material as well. All I can say after that experience is do not feel alone out there. And if you've got the energy to do it, advocate, advocate, advocate. I believe I was asked to speak because I was so vocal throughout my treatment. And only someone who has been through it and can show up with their hair intact six months PFC can have the impact that we have when telling our stories. The next day I received notes from the hourlong meeting detailing every point I hit (a long list of not only what went badly for my husband and me as pioneering cappers, but the ways we could improve the system and support women in the future). It was a big win. But it was the power of our collective struggles and strength that drove me as I spoke. I was so proud for all of us. (Obviously I still am.) So use your voices ladies. Even as you face opposition, you're likely communicating more than you know.
Good luck to everyone going through it now!
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I love to see all of you advocating and helping women become aware.....that is what I had hoped to do with my blog was let women know they have choice and they have power even when going through BC. Love you girls!!!!
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Jbandkb1, I used Nioxin about a month PFC. You may notice some regrowth around the nape of the neck, above the ears (where there are cap fit issues) first, because that likely fell out first. But the truth is that one day it just starts coming and then it's off to the races. My surgeon told me that there's a bounceback effect after the chemo starts to leave your system and those cells that have been suppressed just start to go like gangbusters. I've cut, over the course of three months, nearly six inches off the hair I maintained (and still have the same below the shoulder length hair). And the new growth is just going nuts everywhere. But be patient. Most of the new growth started at four to six weeks PFC. I just don't think you can get it going much faster than that. The chemicals have to leave your body. But no worries! It goes by fast. Good luck!
(Maybe someone has a miracle product out there?)
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No miracle products from me, but I did take biotin for several months PFC. Did it help? Who knows! But it didn't hurt me and was cheap, so what the heck is what I thought.
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And GREAT job pch!!!!
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Hi all!
Anyone out there make it with their hair through SIX rounds of TC (every 3 weeks) cold capping? Most I see who post that are/were on TC only have/had 4 rounds. I am 15 days post my first round and starting to shed. We struggled with the caps fitting well (straps too long, wasn't really uncomfortable to me even though the temp readings were in the right range, if not colder) so I'm anxiously waiting to see what happens....and if I think it will work 6 rounds...through the last week of January - my last round (that's along time). I guess these next 7 days will tell me a lot.
Andra xo
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Pch That's amazing to get the word out and show other what we all know. Great job. Thanks for the info on the hair too.
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PCH I am so proud of you!! Pioneers like you are going to make it so much easier for the next women facing cancer. Thank you for all your work.
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pch, thnx for getting the word out for all of us! You rock! Thanks for always being there for me and all the others here on this board!! ♡Kim
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Hey ladies
Just looking for some reassurance I'm 12 weeks PFC and even though my shedding has slowed its still there and my just past my shoulder length hair is soooo thin I m starting to look like the crypt keeper my scalp is covered though and I'm now going to cut it to just above my shoulders I already have 2 inch hairs sprouting everywhere and my question is to all those PFC and who had thinning how long before you noticed it was thickening up?
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Hello All - I just posted the link below here in the forum about my wife's experience with the Paxman cold cap clinical trial and wanted to put this post here since I know this is the ultimate thread for cold cappers! I'm hoping our experience helps others on this great forum!
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It would not be offered as a treatment option as it is not FDA approved so no doctor can prescribe it. The FDA is all about the money and the approval process costs a lot. FDA has approved the contents of the cap but not the process. Utter nonsense. The caps have been used successfully in England for 20 years and are approved by their Ministry of Health. I used them this year during Taxol treatment. You precool for 50 minutes prior to start of infusion and caps are changed every half hour. I have always been a heavy shedder. The shedding is a little more and the hair not as thick but it is still waist length and beautiful. The caps do work.
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It would not be offered as a treatment option as it is not FDA approved so no doctor can prescribe it. The FDA is all about the money and the approval process costs a lot. FDA has approved the contents of the cap but not the process. Utter nonsense. The caps have been used successfully in England for 20 years and are approved by their Ministry of Health. I used them this year during Taxol treatment. You precool for 50 minutes prior to start of infusion and caps are changed every half hour. I have always been a heavy shedder. The shedding is a little more and the hair not as thick but it is still waist length and beautiful. The caps do work.
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Hey, I just saw a bit of Angie and cold caps on my local ABC news! They were teasing a longer story about cancer and new treatments, which will be on Monday night. Angie, you did great - can't wait to see the full story
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Hi Pat - Yes, I just found out the news clip will be airing at 4:30 today on Channel 5 here in Minneapolis. I've got the DVR set to record ;-) Supposedly, I will get a link to see it online as well. If/when I do, I will post it on this thread.
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I just watched the whole segment featuring Angie - it's very well done! And I got to see my wonderful Dr. Bloom too - wonderful in every respect except that he still refuses to even mention cold caps to his patients. Angie, do you have Dr. Bloom or did they just recruit him for the segment? Also our fantastic local cold cap rep Susan is in the segment. I don't know how to do a link on my iPad, but you can go to kstp.com, and click on the "inside your health" link near the top of the home page. Hopefully this will really help get the word out
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angie, you were great! and looking fabulous
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ladies,
Day 26 - and 2 AC infusion down. What is considered normal shedding and what should I be concerned about. I started losing strands two days ago and I'm concerned. I'd say maybe I've lost 100 hairs total. I have baby fine hair so I have less to lose! I'm trying to stay calm. My 40th is in a few weeks is it too much to want hair for it
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Angie,
You were great!
Here's the link to Angie's video segment: http://kstp.com/article/stories/S3945159.shtml?cat...
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