Cold Caps Users Past and Present, to Save Hair
Comments
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Hi cs718,
I to have the problem with feeling nauseated or a type of motion sickness for the first 5 minutes of each cap. I thought I was the only one!! I think it is from the anxiety of it all but I just finished my 4 treatment of AC yesterday and now it is on to Taxol. With each treatment the caps seemed to fit better and better (thanks to my husband!!) so that shouldn't be the reason for the anxiety. Hopefully that will get better. I have had alot of thinning but nobody (even the people who know I am in treatment) can tell! I have been telling everyone about them and how they work. So far I am so glad that I tried them!! Kelli
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Hi, Kelli;
Thanks for writiing; It's an interesting reaction we've had - Frank said he didn't know anyone who reported it - I still think it's an inner ear thing since the caps are somewhat "weighted" on top - like myh friend said when he tried it. In any event, it didn't stop me although when we practiced the night before I was thinking, hmmmm, I don't think I'm going to be able to do this tomorrow. but I did and I will next week again. From what I have heard, the taxol will be easier than the AC; my friend did those rounds. So good wishes for the next part.
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Hello All,
Hope everyone is doing fine. Kelli-Iam glad to hear you are too!!! It's true that the cold temp does put the follicles to sleep and constricts the blood vessels so the chemo (most of it) doesnt get in there. I just wanted to let you know that I heard about the Stimulation Therapy (used to grow your hair back faster) from none other than Frank Fronda! Woman have been doing that with great results. I would never pass on information like that unless I heard it from him. So those of you with caps at home in your freezer you could try it and see. gmp300 Geralyn
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Hello all, I am so happy to see that so many are trying and having success with the cold caps, although to varing degrees. For those that have lost their eyelases and brow, I too lost ALL eyelashes and most of my eyebrows. I started using Latisse about 3 weeks out of treatment and have had great results. I have posted a pic of what they looked like 3 months post tx and about 2 month of useage (in yellow sweat shirt). I have mascara on in these pics.
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This is what my eyelashes look like today without mascara.
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Hi Can-D:
Thanks for the pics...I've got one more treatment and my eyelashes are so thin...I don't even think that I have any on the lower lids! I've got an appointment in March with a surgeon regarding my upcoming bilateral mx (can't wait!! NOT!). I think I will try and find a PS around where I live so I can get the latisse and start with it now. Can you use the latisse on the lower lashes as well? Thanks again for sharing!!
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I used it on my lower eyelashes. I also used it on my eyebrow for about one month.
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Hi Can-D,
How are you? We haven't spoke in a long time! Your lashes are beautiful! I used Latisse too and mine grew back quick too--then I used it for a few months and quit using it figuring I have my lashes back and that stuff isn't cheap. After about 3 weeks after I quit-my lashes started thinning out and I was scared I was going to loose them again. I know they go back to the state they were in before you started using it but wasn't sure-what state-before or after chemo? Well I didn't want to stay on it forever so I stayed off it and although my lashes thinned again they never all came out and grew back to normal fairly quickly. I wondered if that happened to you? Yours look great-are you still using it? Call me some time-I'd love to chat! Geralyn
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re insurance reimbursement....the rx from the doc for cranial prosthesis is enough? or do i need to include something from frank? like a credit card bill? i dont think i have much else from him. thank you
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Arbella-I think the rx is enough-You probably should check with your insurance on their requirements since they are all different. Geralyn
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Frank told me that he could send me an invoice of some sort that could go with the rx from the doctor...
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Chemo #4 tomorrow. With all of this snow I may just stick my head out the window and skip the Cold Cap.
(Ha, Ha)
Hopefully we can use hubby's 4X4 and make it to the office. I was a bit worried when we went to Safeway for our Dry Ice and the store was closed! I called and got the manager who said he sent everyone home. I freaked out about having to get the Dry Ice and need it for chemo etc. He told me to come over and he would give us some and we could pay him back later. NICE GUY!!!
Hair is hanging on...
Good wishes to others this week etc.
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Sorry to be on so much...
I was just wondering if your Cold Caps feel colder with each treatment? I could barely stand mine today and we are trying to do them all the same temp. I don't know if my hair is thinning and that would be why it felt so darn cold?
Thanks.
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I had TCH #4 a few days ago Ang...and it is getting miserably cold!!! Maybe it's becasue we see the end in sight? I only have thinning around the ears/temple area. The caps don't seem to reach right there very well..we keep playing with the straps etc. I have noticed that if my husband presses too hard on my head putting the straps on I get REALLY dizzy. I do think there is something to the dizzy thing mentioned above!!
My onc says she will believe it works a few months after treatment ends and I still have hair. Until then, she thinks I am nuts
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Using the eyebrow bands from the back of neck to cover the temple area is great when you don't get good coverage with the cap alone. Also I read somewhere about bringing an electric blanket with you during chemo. Why didn't I think of that!!!!!!!!!!0
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Ang7 & geewhiz: I thought the same thing about the caps being colder as treatments proceeded. I finished my 5th treatment on Feb. 2nd and I could barely stand it....but my hair has thinned out quite a bit. The "bald patches" above both ears had really started to grow back in between my 4th and 5th treatment.....in which I had to wait 5 weeks because of blood levels. I usually go every 3 weeks and was not happy about putting it off so long. Another thing is that I lost quite a bit of hair starting the day after my 5th treatment and got really scared thinking that I've come this far and now I'm going to lose it all....but after I washed it (and it fluffed it up) you still can't tell I've lost any hair....it has gotten shorter (I guess it trimmed itself by thinning
). I'm thinking that by waiting 5 weeks it was like starting chemo for the first time all over again....but who knows. I'll try and post a current photo soon. Hopefully my final chemo will be 2/24 and I won't have to worry about my crazy head again!!! Take care and STAY WARM!!! 0 -
OK...here are my most recent photos. Since I washed my hair today (even though it has been raining all day) I thought I better get photos now.
NOW FOR THE UGLY TRUTH....the right (below) and left sides where the hair is finally growing back...it was completely bald there for a while! Don't know why the right side has lost more hair than the left?????
Will definitely need a haircut after the last treatment to even things up.
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No Sunshine: You definitely win for the Poster Girl in the ad Frank should one day have in the U.S. Speaking of which, yes, my nurses are pretty noncommittal about my efforts without exact being negative, but as someone wise here said, let them shave their heads! I am however very glad to report that my first oncologist, who is Chief of Breast Oncology at Weill Cornell in New York, and my reconstruction surgeon who also is at Weill Cornell, are both very interested in how my experience with the cold caps goes. And my reconstruction surgeon (also a woman) wants me to get some information and/or some brochures for her to give her patients, remarking at the same time that many women who are borderline candidates for chemo decline to do it because of the trauma of losing their hair. So I am hoping to get some buzz going when i'm done with treatment, and I plan to write an Op Ed article to the NY Times to get some real attention, which I hope they will publish. And I plan on getting into that FDA rejection which is crap; as my surgeon pointed out, the FDA doesn't approve Botox for the face and she uses it all the time with every other plastic surgeon in NY. I'll have to talk to Frank of course but there's some research for me to do and get going. A woman I met in treatment today was on her 9th of l0 treatments and she immediately said that she would have done it.
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In the interest of my upcoming project of publicizing the availability of cold cap treatment, I have a request of the posters on our threard. I would like to collect information on when and how each of learned about the cold cap treatment and what we first did to follow up. I think it would be helpful to see how the word is getting out, in an effort to make it really really public information available to all,. not to mention getting some freezer support out there.
For example, I heard about it from my daughter when she was a third year medical student about 5 years ago. She learned about it with no praticular details during an oncology lecture at school and told me about it when my friend was having chemo two years ago. I never explored it until my recent diagnosis and pulled it together somewhat hysterically with UPS glitches two days before I began chemo, all through Frank's website using the internet.
So when you can, please direct an answer to me by a private message about how you found out about the cold caps and the city and state you live in. I really think it would be useful. Many thanks.
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I've created a brief questionnaire as my first step. unfortunately i don't know how to create links so I am going to publish it right here for users to see and hopefully respond to when they're so inspired. I also incredibly enough noticer that on the main Breast Cancer.org homepage under the section on "Hair" there is nothing that mentions saving your hair, so I guess I could begin right there too. But I believe that armed with the statistics of our sample of users against the huge numbers of women undergoing chemo and the efforts we have gone through to get the therapy will resonate. so here it is and I apologize for having to use the site. But I do urge you to respond when you have the time or inclination. Best regards. See below:
Cold cap user Questionnaire - for Claudia Silbert - please try to respond through private message so it won't clog up the board.
**You need not submit your name, since I am collecting the data for information purposes only in anticipation of publicizing the need for the availability of cold caps. City and state is most helpful.
1. When (month and year is possible) and how did you first learn about the cold cap treatment?
2. What were you told was involved or how the method worked?
3. Did you learn specifically about the Penguin Cold Cap treatment??
4. Did you learn about the possibility of using cold caps before or after you were diagnosed with cancer?
5. What was your oncologist's response when you asked about using the cold caps during treatment?
6. Did your oncologist's office make any accommodation or impose any restrictions in connection with your use of the cold caps during treatement?
7. How much was the cost for supplies: gloves, dry ice, coolers, blankets, thermometers, etc?
8. How much was the cost of the cold caps including the cost of delivery through UPS or Fedex?
9. Did you complete treatment using the cold caps?
10. Would you recommend using the cold caps to others?
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Hello!! I had my 4th TCH on Monday. Suffering the side effects now. I am wondering if anyone had any pain or discomfort to the scalp? I have a feeling like my hair has been pullede really hard. I had this last treatment too and I was scared that it was a sign that I was goimg to lose hair. I didn't. I am wondering if maybe it is frostbite. I got some frostbite on the top of my ear this treatment. Did anyone else have this?
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Shadow2356: I covered my ears with moleskin both times and so far have had no ear problems although a small area of my forehead was reddened but no frostbite. have you been checking the temperatures to make sure the caps aren't too cold? we had to sit on some of ours yesterday to get the temperature down and i had to wear one for 37 minutes until we got it right.
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Hi Shadow2356: I got that same feeling during a couple of my treatments. During the 3rd chemo I actually developed a large scab on the top of my head and was so scared that a large clump of hair would come off with the scab....it was SO hard not to pick at it. I left it alone and let it fall off by itself and no hair ever came out with it. The Onc. nurse told me that if I got frostbite on my head that hair would never grow there again...I don't know if that is true but it did scare me!! I've not have any problems with my ears getting frostbite but when I take the last cap off certain spots on my head (especially on the top) start burning...this may go on for a day or two but then nothing ever happens. We're both almost at the end so hang in there!!0
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Hello, Is anyone taping a piece of gauze on their forhead and temples. I haven't heard anyone mention that and thought I'd mentioin it for those using the caps now. Just cut out a small piece of guaze and tape it on your forhead and temples before your tx. It helps. I got a spot on the top of my head that was crusty. I combed it off when it was ready. I never lost my hair there but it would come and go until I finished chemo.
Hang in there! Geralyn
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To follow up on Geralyn's post, what i have found fantastic is this method:
Dr Scholl's moleskin. Cut it to size to fit on your forehead, AND add a thin piece of gauze underneath; then stick the whole thing to your forehead. It is good for the entire 7 hours i use it. ALSO, cut two sideburn size moleskin patchess for your temples, also with gauze for underneath. This insulates sufficiently that cold headache will likely be eradicated.
For ears, cut pieces to size from thin pantiliners.. they will also stay stuck in place easily for the duration.
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I started TCH this week with the Penguin Cold Caps. Moleskin sounds like a great idea, mtri, thanks. My ears are a bit sore, so I ordered some strapless fleece ear mitts. Hopefully they will be small enough to not cover the hairline. If not, I'll put moleskin on the tops of my ears and my forehead. The only problem we had was that the caps were too cold coming out of the cooler, so the ones that were in boxes and not flat took a lot of work and a bit of extra time to bring to -33C. My helpers actually had an easier time re-freezing the used caps to the right temp than using the caps in the bottom of the cooler. Does anyone pack their coolers with the caps laid out flat and ready to knead? Also, I think we had too much dry ice-- how many pounds of dry ice do you typically get?
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Hi Jill 1965! Yes, I started packing mine in Hefty one zip large bags. I can pack them flat and get it all in one cooler. I only need 40 pounds of dry ice. I crush the ice and layer it all. I get a more consistent temperature this way. When I had them in their containers they would be too cold in places and way too warm in others. It is also much easier to bring one cooler. Cheaper on the ice too.
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I have had 4 Taxotere, carboplatin and herceptin treatments so far and have only lost strands. No bald spots at all. I am so thankful.
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Hello everyone -
this is just a note to say I did Cold Cap treatment and it worked pretty well overall. I am base in central London (England) and here we can get this from the NHS. Anyway, I had FEC as my chemo and managed to retain a lot of hair. IT is thin, but growing well. I finished December 4th 09, and my hair was already growing again before the end of treatment. At the moment I look like a cokatoo!
With all best wishes for your speedy hair growth -
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Hi Jill1965--When I first started with the cold caps I had the same problem. For my second treatment I learned to put the caps in large ziploc bags and lay them out flat in the cooler. That worked much better than the boxes provided with the caps. We also put lots of newspapers in between the caps and the dry ice so that the caps don't get so cold that it takes forever to get them to the right temps. Usually around 10 minutes prior to changing the caps my BF takes one out and starts kneading it...he will also take another one out and let it warm up some...it took a while to get the "system" down but after 5 chemos I think we have it!!! I was buying about $80.00 worth of dry ice at first but now I'm down to about $60.00-$50.00 each time. I get it at Kroger and it comes in blocks that they charge by the pound (can't remember how much per pound). Good luck to you...I'm on TCH also and my hair has thinned but is still covering my head and I only have one more to go. Take care!
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