Cold Caps Users Past and Present, to Save Hair
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cs718 -- I am OVER schlepping the coolers. UGH!! My poor husbands hands are raw, even with construction gloves, because of the dry ice. It really is ridiculous, isn't it? Hopefully we can make a small difference just by posting here, for someone to follow after us and learn. I do think that keeping my hair has given me the mental attitude to keep moving forward. I don't look like a cancer patient, so I don't feel like one..most days
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GeeWhiz;
That's exactly how I feel; trying to stay myself and just dealing with a necessary treatment for disease that I don't have to share with every stranger in the street. We got the ice thing down pretty well to a pattern and it will be easier for the next treatment. we all finally slept the day after the first chemo since the dread and anxiety was over. now i'm kind of dreading the neulasta which i'm getting on monday. I've also started a file of high profile people and businesses who are going on my target list when I'm ready to attack my project to push the FDA and whoever for approving cold cap therapy here in the U.S. or at least getting some real trials going and stop ignoring another serious woman's health issue. i'll have to figure out how to start a special thread for everyone can add to it. Thanks for writing and, as my dear old dad would say, "Carry On!"
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Update 11 weeks out:
My 6th and last TC tx was on 11/6/09. I have a large skull and the caps weren't a great fit for me. In the last 2 cycles, my hair thinned so much that I did resort to caps and a wig even though I had full coverage. Virtually all of my eyebrows and eyelashes feel out but mainly after I had completed chemo. I am using Latisse now, but wish I would have done it during chemo. My eyebrows are really coming back but my eyelashes are just little buds at this point. My body hair is returning and I now have to shave my legs and pits and (sadly) pluck my chin again.
In addition to thinning, I lost some hair around my hairline due to the large skull. New hair is growing in, which is creating an interesting look along the hairline of my face. I have some original long bangs and new bangs that are nearly 1" long. The hair I lost in my temples and around my ears is also coming back, so I have wispy side burns. I had lost a LOT of hair at the nape of my neck and some of that actually started growing back during chemo when Frank had me use eyebrow straps to supplement the cold caps in that area after the 3rd tx. It's now about 2" long and somewhat curly. If all of my new hair is curly and the hair I kept stays straight, I may end up with an interesting hairstyle. Because I used Johnson's Baby shampoo and no conditioner. The hair I did keep is very dry and brittle. If there are alternatives that don't dry the hair, I would really recommend using them.
Does anyone know when it is safe to begin coloring/bleaching the hair again. My new hairs are mostly gray or white.
On a side note, I just had my mx last Friday (I had neoadjuvant chemo). Unfortunately, I got a staph infection from a catheter from a pain pump that caused a large cellutitis and was readmitted Wed. I had a PICC line inserted and should be going home today with 2 weeks of IV daptomycin. I'm waiting to find out if it's MRSA. If any of you had anything like that happen, please PM me.
Best wishes,
Lori
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Hey Lori -
I am so sorry about your staph infection. I hope you are feeling better soon. You were one of the main people whose info. I read before I chose the Cold Cap route. Thanks for all of your thoughts etc.
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NewportLori: Shampoo and conditioner, non-drying and nice: PURE RESULTS by Regis Designline
here is another good one: Derm Organic Sulfate Free conditioning Shampoo, by Argan
Also, Sea-Chi Leave in Conditioner is excellent.
cs718: Just in case you didn't do this: use the moleskin, cut to size, on your forehead, and put a gauze pad underneath that; also, cut some moleskin "sideburns" too, with slivers of the gauze under these. That trick, plus the electric blanket: golden.
FOLKS, excellent progress re Cold caps knowledge on this front: check out rapunzelproject.org
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hi ladies
2 questions ..for those who are done, how long did you wait post chemo to cut or color your hair?
question 2...did any of you have any luck getting insurance to reimburse you for any part of the cold cap expense?
thank you
arbella
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When I spoke to Frank he said full scalp prosthesis could be a wig or hats. He said technically the cold caps fit that description. He said you can submit an invoice and possibly get it covered as a scalp prosthesis. He said some people have been successful with this. I have not tried it yet, but I will.
If anyone has been successful with this please write about it.
Thanks!
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Lori-I'm so sorry to hear about the staph infection...hopefully the antibiotics will clear it up soon. I keep having to postpone my last two chemos due to very low blood levels and a UTI that made me want to scream (probably TMI here)...I wish I could just cancel the last two and move on to the next step. Today was the 1st day that I have felt normal since my dx...FINALLY a good day!!!
I have decided to go for the bilateral mx since I don't ever want to deal with this again. Other than the staph infection I hope your recovery goes well without any more problems. Thanks for the input on the hair regrowth...I was plucking those pesky little white hairs around my ears and bangs until you stated in an earlier post that they grow in white....OOPS!
Frank told me on the phone a week or so ago that I could color my hair (no peroxide/no bleach) now...even though I'm still doing chemo. He said that I just couldn't get the color on my scalp...I don't know how I could do that and I'm pretty scared to try it right now...my hair has thinned a lot around my ears and the back of the neck like yours did....now I kinda know what to expect....I'll have to get that flat iron out if it starts growing in curly since my hair is stick straight...I agree that would be an interesting hair style!! Take care and feel better!!!
Oh by the way...Frank also told me about submitting my cranial prosthesis (it's strange how the medical industry words this!!!) prescription to my insurance company as well...I'm going to try and see what BCBS thinks about it...I'll let everyone know.
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Regarding reimbursement: in order to receive reimbursement from BCBS for max of $350., a doctor's prescription MUST be submitted for the "cranial prosthesis". Getting a physician to write a scrip for cold caps in this fashion would be an interesting idea, and probably a hard sell.
Here is an idea for those experiencing SOME thinning, who would like to create a seamless embellishment without resorting to wig:
Human hair clip in extensions. They are BEAUTIFUL, and easy, invisible, yet do the job. They CAN be colored by your stylist also.(THEY would be classifiable as Cranial Prosthesis, and so a scrip for them would be covered by insurer, btw)
here is an example:http://cgi.ebay.com/20-7pcs-remy-HUMAN-HAIR-CLIP-IN-EXTENSION-04-32-80g_W0QQitemZ170433441335QQcmdZViewItemQQptZUS_CSA_MWA_Wigs_Extensions?hash=item27ae9fee37
These are great for thin hair regardless of the situation, so thought I would share that tip.
The no -peroxide /no- ammonia hair coloring ( eg, Robert Craig ) did NOT work for me, although it may have required a LOT more time left on the roots...
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Hello Everyone,
There are so many of us now!!! I remember when I started using the cold caps there were only 2 or 3 of us. Regarding some of the questions that you's are asking. Mtri1111 suggested the Pure Results and that seems to be the best so far. As far as coloring your hair-as Frank Fronda has said that is ok if there is NO peroxide or ammonia. Like everyone else Iam getting grey hair too and Iam afraid to color. I have heard stories of women loosing their hair up to 7 months after chemo after coloring it with regular color. Now keep in mind OUR hair follicles were protected from the chemo by using the cold caps so our hair follicles are not damaged (that is why it grows back quicker!) but their still may be residue in the follicle which can interact with certain chemicals. Iam going to take no chances and only use no peroxide and no ammonia products for a long while. I just bought that color stick and it helps to color the grey to. Iam almost 5 months out and still havn't colored my hair. This is the first time in my life that I don't care if it's grey or dry Iam just so happy that it is on my head! LOL!! Iam just taking extra care with my hair right now for as long as I can. I started taking silica tablets too.
For those of you's that are still going thru chemo and have the caps at home in your freezer--If you wear them in between treatment for maybe an hour or so and change them every 30 minutes it will help to stimulate your hair growth! DO NOT put on dry ice only out of your regular freezer. The cold helps stimulate hair growth!
I hope everyone is doing well--Geralyn
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Geralyn, did you run into any issues with thinning around the ears? We keep working on repositioning the cap jsut like the video, and my head is small/medium...but there doesn't seem to be good coverage in the temple/ear area. We have the straps and have used hose etc. Any ideas? It's not terribly noticeable, and l jsut had treatment 3. I am afraid of what this month will do to me at the 14-17 day mark.
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Hello geewiz,
I did have thinning around the ears. You could hardly tell when I was going thru chemo but I noticed it when my hair started growing back! It was coming in dark with of course those nasty grey hairs. Now I have my side burns back. It really grew back quick and not even noticable unless I tell and show someone! I like it because I play with my baby hairs and it reminds me that my whole head could be like that and I really appreciate Frank Fronda and his cold caps!
I think that they might be improving the caps. One suggestion is that they have brow band and maybe you could order them and put those on the sides? I also made sure that the velcro strap was all the way to the edge of the cap and really tight. And make sure the sides are really cold enough. How many more tx's do you have? Good luck and feel free to PM me anytime!
Geralyn
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Geralyn-When did you notice that your hair quit thinning after chemo (weeks or months)?? I have 2 more treatments...if they would quit canceling them due to low blood levels...this is dragggggiiiinnggg out forever!! My next treatment is this Thursday...hopefully!
My hair still thins everyday but not that much (I'm now 4 weeks out from my last chemo)....it thins the most when I wash it but that's only about once or twice a week depending on if I have to leave my office to work. I'm looking forward to the day that I don't dread combing it and watching all the hair come out....I'm hoping that soon after chemo it will stop! Thanks for any words of encouragement.
Carol
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Hi Carol---Sorry to hear that your chemo is drag-g-g-ging out!! I know how anxious you are to get this over with! Your almost there! Well I emailed Frank Fronda and asked about the sides and were to put the straps. He did say you could order brow bands (used for eyebrows and use them on the sides. But he also said to watch the gel and make sure that when you put the long strap up on the sides that it is not squishing the gel up. Not sure if it is doing that but something to keep an eye out for--Also he suggested to change the caps maybe every 25 minutes in case there is not enough gel on the sides (for whatever reason) and this way the gel on the sides will stay cold enough in case it is warming faster than the rest of the cap. Hope that helps with that. Let me know if it helped you.
As far as how long my hair thinned after chemo--it was different after every chemo. My first 3 tx's went great! Everything went smooth etc and I thinned strands after about a week after tx and it lasted maybe a week and than slowed down till another week after the next tx. I was very happy because I didn't seem to be loosing that much hair for long and than it slowed down (sigh of relief). My last tx didn't go so smooth. I had a lot of screw ups from not enough dry ice, not cold enough, to to cold, caps mushrooming up because they weren't fitted right. I was a wreck!! Crying- "After everything I went thru I screwed up my last tx!!! Now Iam going to loose my hair! " So I was freaking out. I thinned more than all the other treatments. Once again only strands-but it seemed like alot and it seemed like it would never end. It probably lasted about a month after my last treament. No clumps fell out but now and then a hair would fall on my shoulders or after I washed it or combed it I would get maybe 6-7 strands-but having that happen every day-freaked me out. Iam happy to say it did stop and I never lost all my hair. I still have a full head of BIG hair. Granted it is thinner than before but NOONE can tell but me. It looks the same. Part of it is that some hair is older and going to fall out anyway and some is from the chemo-BUT You can't tell at all. We must have more hair on our heads than we ever imagined!!
Hope that helps! Good Luck!
Geralyn
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Hi Carol and Geralyn,
Great to speak with both of you! Please pass info on regarding the website www.rapunzelproject.org
We need to spread the word!
Shirley
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OKEY DOKEY SHIRLEY!!!!
Well you just did! But I will send it off to other places also! It was great talking to you too!
Take Care,
Geralyn
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Hi all -
I have not noticed much thinning until I washed my hair today. It does appear that my "sideburns" are disappearing. If I keep my hair straight down over them than you cannot tell. My onc. did point this out today when she took my temp. This is after my 3rd treatment. I just hope most of my hair remains the way it is for the rest of treatment. The wind was whipping today and I kept holding onto my hair like it might just "give up and fly off" or something...
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Hello Anj7,
Like I said in the other post-I lost my sideburns to but never could tell till they started to grow back. I kept the rest of my hair so that 's not bad! Plus your hair will grow back faster because your protecting your hair follicles. Just figure-If you weren't using cold caps-after your 3rd tx you would have lost all of your hair by now. I know the fear that your hair is going to blow off your head by the wind! Be positve -it's working with you! Make sure at your next tx that yhe gel is down on the sides of your head and not squished up by the bands. Good Luck! Geralyn
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Hi all,
My bangs are growing in the front which I know is great...am I allowed to trim them or would that mess things up? As I have gotten this far, I do not want to do anything wrong.
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Hi Ang7--I've trimmed my bangs twice and have two more treatements to go. I just wish the rest of my hair would stay put...my right side keeps thinning alot...don't know what's up with that unless during the last treatment the caps weren't right and I also sleep on that side....so who knows...but I still have hair!!!
Carol
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Thanks Carol,
I know I could not get through all of this without you all.
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Hello!
I thought of another thing that I learned when I used the caps that I didn't hear anyone mention on here. Don't wash your hair 3 days before and 3 days after chemo. I found that in my notes I was looking over the other day and thought I would share! -Probably because of the residue in your hair follicles/bulbs mixing with the chemo. Just another tip!
Geralyn
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Hi all,
Well, I tried the Pure Results by Regis and it is great! MUCH better than baby shampoo.
I also was told about an eyelash/brow product that a friend in California had used. It is called RapidLash and I just ordered some from Bed, Bath and Beyond. I am going to show my oncologist and start using it if possible.
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Hi Everyone, Hope things are going well for each of you. I just wanted to post a hair update now that I am 8 weeks post my final TC-H treatment. My hair is filling in nicely all over my head. I ended up having it cut in a bob style because the "new" hair seemed to be pushing my "old" hair out from my head and the new growth was pretty noticeable. Now it all blends in better. I am using the Pure Results by Regis and the condition of my hair is great. For color, I am using Fanci-Full by Roux. It's not ideal but does seem to cover my gray without peroxide or ammonia. The main thing I don't like about it is that it seems to really saturate my hair making it difficult to dry. Since it is temporary, I have to use it every time I wash. My hair dresser told me about a product called Revive TH which she says seems to stimulate hair growth. She did not have any in stock so I have ordered some. I'll give it a try and will post to let everyone know if it works for me or not. Take care!
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Hi girls, if you have already had 2 treatments, is it too late to start with the cold caps?
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Sorry Jenny,
I really don't know the answer...
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jenny, have you lost any hair inthe 2 treatments? if you havent i cant see why you couldnt start now...i would get in touch with frank and ask him.
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Hello Jenny4210--The answer to your questions is Yes and no. Yes it might be to late to save your hair. Iam not sure what kind of chemo you are on. You already had 2 tx. Iam not sure if you will loose just some or all-everyone seems to shave their head at that point. I always wonder that question! But it is not to late to save your bulbs!! Every time you get chemo it damages your hair follicles and bulbs which is why it takes longer to grow back and you never know how it will grow back. Also some women are using the caps for Stimulation Therapy at home to stimulate hair growth. by using the caps at home for an hour or so now and then in between treatments (straight out of the freezer, not dry iced) iiiit stimulates your hair to grow and woman are happy with those results. So there is some benefits to still using them. Hope that helped.
Geralyn
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Hi to all especially gmp300 and the related line of ladies;
\Not to confuse things but my understanding is that the cold cap works because the severity of the temperature greatly constricts the blood vessels in the scalp to the extent that they don't take up the chemo chemicals when they pass through. So, i'm not sure about the cold caps "stimulating" hair growth but our friend Frank will best know all of that. In any event I want to comment that I do think it is very critical to get the temperatures in the caps exactly right for them to be most effective. My daughter and friend did it by moving the caps around in the cooler with the dry ice pretty consistently throughout the day and using an infra red thermometer ($80 at sears but you can resell it at ebay). to check the temperatures. I had 14 caps: I fit 6 in their boxes with 2 in plastic bags in one 62 gallon cooler and the other six caps in their boxes in a 52 gallon cooler, both with dry ice. Also, twin size electric blanket is a must. I've only had one treatment so i don't yet know how things are shaping out til next week. I would also comment that I had some trouble feeling nauseated or motion-type sickness for the first five minutes of each cap but i was very very anxious so that might have been the cause. I learned to keep my head still and concentrate, squeezing that little rubber ball til I felt better. Good luck and best wishes to you tough ladies. and I'm not kidding. who ever called us the weaker sex?
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Hi gee whiz;
sorry i'm responding so late. yes, it is ridiculous for us to have to do this but I guess that's what it is when you are breaking ground for future women who hopefully will look back at these efforts like it's the Stone Age, which it is unfortunately. But I agree wholeheartedly that being able to keep your hair is important for a lot of reasons, one of which is dignity and privacy; why should the people on the subway know I have cancer and/or are going through chemo?
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