Cold Caps Users Past and Present, to Save Hair
Comments
-
Happy to be the resident geek of the group:-)0 -
I'd also like to add that today is my last chemo and I'll officially be done with the caps. I still have about half my hair, although it is still shedding heavily. I'd like to give my supplies to someone who needs them. I've got a thermometer, some little ear covers, tape for the forehead, some gauze for the scalp (I didn't need to use that). Is there anyone here who is in need of those items? I'm located in the Los Angeles area and can arrange a pick up or drop off or I'd be happy to mail them out if you aren't a local. The caps are quite an expense so I'm happy to assist anyone who may dealing with overwhelm or a financial burden. Please PM me and I'll see what I can do.0 -
Wittygirl-There are a variety of things that can influence cold cap results. Cutting your hair would not have been a positive choice. Though, depending on how thick the hair is, thinning might be helpful... I wouldn't recommend it though because I've helped women with thick hair that have done very well. There are also other important factors to consider. Have you got a Lupron injection? I believe that can contribute to hair thinning more than average. Also, the 'professionals' that helped you might not have had much experience with changing the caps. They watch a 15 minute video and are considered trained, yet they have little to no hands-on experience. Like they say, hindsight is 20/20 but we can't know everything. Don't be hard on yourself, you've done everything you knew to do! The hair you lose will fill in very quickly with that you've saved.0 -
Hello everyone,
I've just started hearing about these cold caps. I didn't realize how expensive they were. I can't believe it's $500 per month. Is there another company, beside the penguin one, that offers these caps?
Thank you in advance.0 -
tmb - thank you so much for that post on the insurance! I have been meaning to start the process with BC BS myself and you have given me great momentum, not to mention a template for my letter!
Texas and Orangemama - welcome to the cold cap club! I am 4 weeks PFC and have a full head of hair with about a 10% loss, if that. I followed the protocols very carefully - I still baby my hair and my first hair cut since July is next week. My worst shedding came after the first tx. Then another cold capper reminded me to knead the caps every 10 minutes to make sure the cold was hitting all the follicles. Also, my husband got extra ice to make sure the caps were cold enough. I haven't had much shedding since. I also drank about a gallon or more of water a day. I think that is key.
I had my share of SE's during chemo (TC) but honestly, I feel it is going to be so much easier to move past this cancer diagnosis and treatment with a full head of hair. My struggles with the chemo are over. My struggles with radiation are minimal so far. When my treatments are done, I feel like I can step back into who I am and what I do without having the constant reminder of a bald head or wig. Hang in there. It is work, but when you are in that chair watching everyone reading their magazine or watching their iPad and you are clenching your hands to get through the cold, just remember you are fighting for your identity and your privacy. And you will win! Good luck!0 -
Hi Everyone,
Been busy but wanted to stop by and say welcome to the newbees and congrats to those finishing. Plus..Hang In there to the ones in the trenches!!!! Awesome news about some insurance coverage. I think I am going to give it a try. What the heck, right?
Deelightful, I use ElastoGel caps. There are some companies that will rent them to you. One i will definately NOT recommend! I don't know much about the others. They can be around $289 per treatment so depending on your schedule they can be right up there with the PCCs.
However.......you can buy them on Amazon for $510 for the 6 caps you need. Last I saw, shipping was free. YOu would then have to get your own dry ice, but a lot of the PCC ladies have to do that anyhow. If you would like some more details or if you have any question, please let me know. I was very successful with the ElastoGels. I estimate I shed about 30% or my hair. I am now almost 4 months since last chemo and where I shed is growing like gang busters and is over 1 1/2 inches long! My blog is sad! I put it together really fast to get the videos out for a lady about to start chemo so she could see the cap changes. They were super easy to use!
Best Wishes to all! stay warm and dry :0)0 -
Thanks all for your comments about my photos. I should have waited...I got my first haircut since before chemo this Wednesday and I look sooooo much better!
I brought my own shampoo and conditioner with me and had my hair washed in cold water and left with wet hair (in 30 degree weather. My hairdresser was happy to see me. I've been her client for 25 years and I haven't seen her since she colored my hair in June.
I'm starting to get brows and very short lashes, but it still looks like something is missing.0 -
Hey ladies,
Can you believe I have been going back and forth with BCBS since 2009? I will do a letter similar to the one mentioned above and see if I get any results. I wanted to post that my sister had gone in for an iron infusion and she said there were a number of ladies getting cold caps out of a freezer and wearing them. I was so pleased by this as my oncologist did not know much about them when I was diagnosed and she requested a bunch of info. from Frank before she agreed. I really hope they will be part of the protocol one day...
0 -
Just finished my 2nd chemo today and I feel like the cap changes went really well this time! So, it has been 21 days since the first one and I don't seem to be shedding more than normal, except around my ears and my neck. So far, so good! Thanks again for everyone's support and tips. I truly appreciate it! Good luck to all of you ladies who are also going through this right now. We got this!0 -
Daye, that is awesome news! Your hair is beautiful in your pic. Glad it is staying put!!!!!0 -
Yay Daye!!!!! So wonderful to hear.
0 -
Hi all
I wanted to share my experience with using cold caps. I was treated with dose dense AC-T, a total of 8 treatments, 4 of AC followed by 4 of T (Taxol) this summer. I finished at the very endo of August. I used the Penguin caps. Hair held on very well throughout the first 3 AC's, then had persistent shedding after 3rd AC through Taxol. Ultimately I kept most of my hair on the top of my head, but lost a lot above both ears and lost a lot of hair in the back of my head, crown to almost nape of neck, retaining some in the lower part.
I did not use any covering throughout all of chemo, but about 1 week after chemo, due mostly to loss in back of head, I wore a wig for about 2 months. The wig, while uncomfortable for a while, looked decent and allowed me not to look so hag-like, which I was looking like toward end of chemo. It also relieved my anxiety, as I kept worrying how I'd be able to fix my hair to cover up the bald spots and not be a weird looking spectacle.
During the 2 months under the wig the hair above the ears filled in nicely while the back is a work in progress. I stopped wearing the wig in early November, and I now wear my hair in a small bun/twist in the back. I retained enough of my own hair on the top and sides and nape of neck to do this. It looks halfway decent, believe it or not, thin, but not at all like the post-chemo buzz cut we are all familiar with. I colored once with Clairol Beautiful (semi-perm, no ammonia), so the new greys above ears and in back would blend with the old longish browns from top and bottom. Will need to color again in near future
.
The caps worked where they adhered best to my head. I am petite, my head is on small side, and despite my cappers twisting and pulling the back flaps just did not hit my head well back there. There was always a some "poof" (a space between head and cap) at the crown of my head. I used the black velcro bands to make the top adhere, but did not have any method of keeping the cap closer to the crown/back of head. Plus the chemo that I got was pretty intense, so even a partial success is pretty surprising.
Hopefully this will help inform others who are anticipating AC-T chemo and considering the caps. I am glad I did it. I would have wondered what might have happened had I not. Also, I did not want that buzz cut look for many post chemo months. Also, as a runner, err jogger, it allowed me to exercise in public during and post chemo without feeling self-conscious, as I had enough native hair on the top and bottom of my head to put it in a little twist and cover the balding sides with a sweatband.0 -
Newchallenges - Impressive!0 -
I'm completely new to this site and have to confess that I haven't read this thread all the way through. However, I thought I would add my experience.
First time around, I used the cold cap. I had 6x FEC and was determined to "keep" my hair. I had a short haircut anyway and so was amazed at how much came out. BUT I kept enough to avoid needing a wig. Then I had a bad time so #6 treatment was postponed for a week by which point I couldn't do with the fuss of the cold cap, so didn't bother. And woke up on Christmas morning 2011 to find the remainder of my hair stayed on the pillow! But it came back all thick and curly (it has always been straight) and stayed that way for quite a few months!
This time around on the Taxotere/carboplatin, I decided to go "au naturel" - thank you Jessie J for shaving her head on live TV for charity and giving me a role model. At least I kept cool at night during our unexpected hot summer! Finished chemo in July (x4 as I was too ill to manage the planned 6) and was still bald early September. But now have "short and curlies". And it is darker, too! I'd hoped for red/coppery but at least there's less grey than before!
And why is it that the unwanted hair, you know what I mean (eg "hag hairs on chin") grow back faster than the hair on your head?
0 -
hello, very new to this site and hoping for any advise on the cold caps and my treatment. I start chemo this week with 5 (once a week) Cisplatin along with radiation and then Carboplatin and Taxol for 6 times (every 3 weeks). I have uterine cancer btw, but the penguin site recommended this forum for info so here I am. My dr at MSK is not a fan and is telling me not to bother, that I will lose my hair anyway. He said not during the Cisplatin but definitely during the next phase. I feel a bit bad like i am being vain or something but keeping my hair is important to me. Has anyone else been on a similar protocol as me and had any luck with the caps?0 -
RJmimi, I don't know anything at all about Cisplatin, but I think you would do very well with cold caps during the Carboplatin and Taxol phase. A great many of the women on this thread had Carboplatin and Taxotere (which is a close relative of Taxol) and did well with the caps. I had weekly Taxol for 12 weeks (without any other accompanying chemo drug) and lost almost none of my hair. The "every 3 weeks" dose is quite a bit more than the weekly dose, but less than 3 times due to toxicity. A lot of women had very skeptical doctors, until they kept showing up with their hair! I say give it a go.0 -
I've helped several women with the caps that had carboplatin and taxol as part of their regimen and they did great! If you need someone to help you in your area send me a private message.0 -
RJmimi, absolutely no need to apologize for your "vanity" to this group of women. Looking like myself through treatment was very empowering for me. It allowed me to feel some sense of control and normalcy through a very difficult time. I was also able to maintain my privacy and only shared my diagnosis with a close group of friends and family. There are work associates who still have no idea. Almost six months after finishing treatment, I look like myself thanks to cold caps. I hope I would have handled losing my hair with dignity and a sense of humor, but I am very very glad I didn't have to. If you decide to try cold caps, come back to this forum and we'll help coach you through it. Good luck whatever you decide.0
-
rjmimi,
I think most oncologists do not have any real data about the effectiveness of cold caps. Mine also told me they don't work but i was welcome to try. I did carboplatin and taxotere which is similar and I did not loose my hair. There is always a risk, but if you have the budget and the help it's worth a shot.0 -
Tomorrow is day 14 after chemo #1 for me. Guess the next week or so will show how well we did with the caps.... Kind of a weird feeling for an admitted control freak.... it is what it is!0 -
RJmimi - Stick to your guns!
I went to MSK in Manhattan also and after surgery in 2012 was told that I would not be "allowed" to use cold caps during chemotherapy. Nothing I said made a difference. The doctors absolutely would not hear of it and actually told me "it's only Hair!" when I kept pleading. Well, it's not only hair, it was my identity, so I voted with my insurance money and walked right over to NY Hospital's Weill Cornell Breast Center where it director Dr. Anne Moore welcomed me. She told me that 40 women had already used Cold Caps there.
It took MSK a few months to notice that I was missing, but when they did and found out where I had gone, my MSK surgeon Dr. Heerdt - who I loved, called Dr Moore and asked her what was going on at her place. Dr Moore graciously shared her information and results and Dr. Heerdt presented it to the higher ups at MSK. It took them a few more months of discussion, but they finally decided to allow people to use cold caps. Unfortunately, they don't TELL patients about them, they simply allow anyone who already knows to use them. It's frustrating that they have not been more supportive, but if you want to use them, Go for it!
Be sure to ice your fingernails during taxol also as I believe it can damage your nail beds. Taxotere does.
Good luck!
0 -
Hortense -
I never tire of hearing your story. You never allowed your power to be taken from you. Cancer takes enough from us. We all should be allowed to keep control of treatment decisions, including whether to try to save our hair or not.
0 -
RJmimi, Just checking to see how things are working out for you and whether or not you decided to try the cold caps or not. I am currently on day 14 post chemo 1 of Carboplatin and Taxotere and have heard great things about the success with those two drugs and I have been told Taxol and Taxotere are in the same drug family. ... for what that is worth.As for an update on me.... a little shedding so far, but nothing that has caused me any concern. Hair in other regions (clearing throat) is starting to go. Noticed that 2-3 days ago...
I did something pretty foolish yesterday. The weather was just beautiful here and I drove downtown to my plastic surgeon appointment with the top down on my car. It was glorious and I got the giggles thinking of the poor driver behind me if my hair did actually started coming out while I was driving on the interstate, but all seems well. It was awesome after all the yucky weather. Hopefully, it wasn't hard on my hair as I know we are supposed to be babying it during chemo and for months after... I just couldn't resist!!!
Hair seems to be still going strong, but it is definitely a nerve-racking time!
0 -
I know there are a lot of new cappers joining the board - welcome! One of the things I found most encouraging along the way were pictures so I thought I'd repost some of my pfc shots again as they're now so many pages ago...I had 4 rounds of Taxotere/Cytoxin using the cold caps. My hair did thin but really only noticeable to me. Like many others, I lost the most above my ears and the nape of the neck. Both areas started growing back while I was in chemo and are now about 4 inches long - I also have tons of 3-4" hair coming in all over the place which I can see when I blow dry my hair. I really followed protocol for those long 6 months, and am now happily back to my old routine with only normal shedding. Hang in there ladies, it's a lot of effort, but well worth it and really will be over before you know it. I'll attempt to post 2 pictures one is just 2 weeks pfc and the other is about 2 months pfc showing the back with my skinny ponytail. Sorry if they are a bit big, I had trouble figuring out how to post.
" />
" />0 -
0
-
Okay sorry for the extra posts, here is the 2 week pfc pic...
http://i1309.photobucket.com/albums/s634/leslie_rae1/Photoon3-31-13at1200PM3_zps5e062c77.jpg
0 -
thanks for posting your pictures hope! It is reassuring to see proof that the caps do work. Your hair looks great!
It's been 27 days since my first chemo and everything is going well! Shedding a little more than normal, but it hasn't been bad. Other than being flat and greasy, I'd say my hair looks pretty normal!
0 -
I am waiting for my Oncotype results and I wish to express my appreciation to everyone who has shared on this thread.
0 -
Hope you look beautiful~
Glad the hair is hanging ok Daye!
Welcome to the new gals!!!
0 -
Happy Holidays to all! Hang in there ladies who are capping right now. It is tough but most often worth it. I think the worst stress (well aside from the whole nasty chemo thing) is wondering, "will I be one for whom it does not work"? And it is hard to know- I wish it was a more precise science.
For most of us it does work though, if you follow everything pretty precisely. I am now ten months PFC and back to "normal"- I take hot showers and wash and brush my hair without thinking twice about it most days. The hairs I had lost came in more wavy so it is a new look but I am taming it- just SO glad to have it.
Most people have no idea I was going through chemo at this time last year- my goal, totally. I am so VERY pleased with the results. For new girls, my avatar pic was taken right after chemo, not before. I kept most of the hair. Whew!! I sure hope you do too.
Hang in there, good luck, and I hope your holidays are bright! (and hairy)
Hugs
0
