Cold Caps Users Past and Present, to Save Hair
Comments
-
I highlighted my hair a little over 6 months PFC with Aveda. I'd brag and say I researched it, but where I was Aveda was the only option. It does look like a choice worth considering -- mild formulas with well trained stylists (they go through a fairly rigorous Aveda program) and lots of salons. The stylist who colored my hair in July has a pet wolf -- you have to love that in a stylist.
My hair didn't look nearly as hideous as I expected after 9ish months of no color because it basically didn't grow. I had it colored July 19th and it hasn't grown enough to merit going back -- maybe a quarter inch? I have had it trimmed once since PFC, and am not seeing a reason to spend the $$$ to do so. It is too thin to do anything with besides a ponytail.
When I look at the slow growing pace, I'm doubly glad I used the caps. I finished chemo mid January and based on grow out, I would MAYBE have an inch and a half of hair at this point.
I think Herceptin and Tamoxifin may impact hair growth, although I was never told that. I'm balking at the AI though -- that one appears to for sure impact hair growth as well as pretty much everything else I'm scared of (besides a recurrence of course -- except I'm strangely not scared of that).0 -
TheLadyGrey - interesting that your hair growth has been so minimal. I think you're right about Herceptin and tamoxifen inhibiting growth at least for some people. So far on Herceptin my hair continues to grow normally. My oncologist has told me that I will start tamoxifen after I'm finished with my year of Herceptin, and after reading your story I'm glad of that!
0 -
ndmk - Don't worry about chemo, it isn't as bad as you think it will be. I was surprised. It doesn't hurt going in and probably won't affect you for a day or so. My husband and I would walk ten blocks from our hotel to the chemo center the following morning so I could get my Neulasta shot, then walk back again, and I felt fine.
Be sure to ice your fingers and toes during your Taxotere infusion to prevent nail damage and ward of neuropathy - nerve damage. I just met someone who didn't and she lost every toenail and many finger nails. Ziplock bags of ice or frozen peas work very well.
I had 4 rounds of T/C spaced three weeks apart and did shed during it, starting around the second treatment. It was heaviest around the third treatment, then let up, only to start shedding in earnest three weeks after my final chemo. It lasted long enough to make me very nervous and thin out the volume of my hair - I still have full coverage. Shedding didn't end until sixteen weeks after that last chemo. Sixteen weeks seems to be a number other women have mentioned as how long their shedding lasted after chemo.
My shedding was uniform and didn't leave me with any bald spots. I have plenty of hair above my ears probably because my helper cleverly used Penguin's gel brow bands just below my caps to be certain I had full coverage. If you have a big head like I do, try using the browband trick too.
My hair continued to grow normally throughout chemo and I have long and healthy roots to prove it. They are about 4" now, six months after I started chemo. So it grew more than half an inch a month which is a very good rate. Much as I would like to color my hair back to my usual blonde, I am going to wait the full six months after my final chemo.
301724 - I had two frost bite spots the size of quarters because we had the caps too cold the first time. They should have been at -32 C. We were more careful after that and had no more trouble. Both spots lost all of their hair, which was upsetting at the time, but they healed up quickly and to my surprise started vigorously regrowing hair right away. I'd been afraid I might be left with two permanently bald spots, but that didn't happen.
By the time I went for my final chemo I think I had about half an inch of growth, enough to cover the bald spots anyway. The only thing is the new hair in those two spots came in very dark which I have never had before. It's pretty funny.
Check your frostbites spots carefully, when mine started to grow I thought I was just feeling more flakes of skin, but what I was feeling turned out to be new hairs - an army of them.
0 -
hortense, thank you for writing up your experience. I was going to forgo icing my toes and fingers but after reading your post, frozen peas is now on my shopping list. I am also going to order the eyebrow bands. I was going to pass on it since its an additional $100 a month but I figure I'm going this far to save my hair...
sebm9, I actually emailed you prior to me posting on this forum!
thank you so much for your write up. It was very inspiring and all my friends have it in their PCC binder for the day of chemo!! 0 -
Just back from chemo session #3 and into last 2 hours of cold caps. My husband (the engineer) has been using a thermocouple to check the temps and the variation in different parts of the cap are crazy. Hope we're managing to stay in the 'sweet spot.' Speaking of spots, have been using gauze on my frostbitten places from session #1 and adding more as needed for spots that feel too cold. This causes me more angst than anything else!
0 -
Hey girls - I have been helping a gal out using cold caps and she is 14 after her first TC treatment. She has a very dry scalp - like a film on her scalp. I know some of you had that...I did not. Any information on it? Is it dandruff? Did you rinse with anything special to get rid of it? Did you leave it alone or what??? I think some gals a long time ago on these threads talked about rinsing with vinegar or something.....any information would be helpful. She is worried about it....I know some others have had that too.
0 -
Hi Maria, I had this really bad... I have naturally oily hair and with the lack of washing got bad build up...horrible scales....Frank recommended adding apple cider vinegar to shampoo - pour shampoo on hand add ACV mix it a little and then put on hair.... I did this and it helped, I also started washing every 3-4 days. Hope this helps...Lisa
0 -
mdg- I got it too. Tell her to try not to worry. I think it's a bit like craddle cap, which is a form of dandruff that's scaley.
At her delicate stage - if you meant she's just 14 days past her first treatment - she is at the point when women who are not using cold caps start to lose their hair, so she's at her most precarious time and when she has to be most cautious. I wouldn't do more than wash gently every 3 - 4 days, letting the shampoo soak a bit longer and rinsing it out extra carefully. Vinegar didn't do much for me, but it's worth trying as everyone's different. Washing more often did seem to help.
What finally helped me was using my fingers to gently massage my scalp during shampooing to loosen the scales - which is how cradle cap is loosened, but I would strongly warn against her doing it right now. I did it nearer my third treatment.
0 -
Hi all cold cap users! I sent an email to the moderators of bc.org asking that they please include the cold cap thread under this topic, where it would most likely be first found. http://www.breastcancer.org/treatment/side_effects/hair_changes
Will you please also send them a message? The word needs to get out to those who've been newly diagnosed! Because of poor marketing it isn't! I can hardly believe that after 3 years in the US most people still aren't aware that this technology exists...To send a message to the Moderators follow this link http://www.breastcancer.org/utils/contact_comments.php
0 -
I edited my post above to include how to send a message to the Moderators. I simply followed the 'Newly Diagnosed' thread until I found a 'Contact Us' link at the bottom of a page. http://www.breastcancer.org/utils/contact_comments.php
0 -
I tried sending a message, but I kept getting an error message about not using header text or HTML markup. I ended up PM-ing the mods.
0 -
That's a perfect spot. I have corresponded with them about making cold cap information easier to find a few times. They made a few changes as a result, but seem reluctant to post it so prominently. I will write them again.
My OBGYN didn't know about cold caps and because I had my hair had no idea I had just finished chemo. He thought I must have had radiation only after surgery. He was fascinated and is looking into them now.
0 -
I heard back from the mods, they are waiting for the San Antonio Breast Cancer Symposium this December. They wrote..."Once those results are presented, our content will be updated."
0 -
Very interesting Laura. I just went to the SABCS site to see what studies are going to be released regarding scalp cooling. Here's what I found:
0 -
Dance, I sure hope they used Penguin for their studies.
0 -
ndmk--I just turned 32 and had my first taxo/herceptin/carboplatin nov 15. aside from being a bit tired, and having a stomach that isn't wanting to eat much other than rice or buttered bread, or apples!(like after you have had a flu)..... I was expecting a lot worse. I had myself not being able to breathe I was so anxious about it--It was then I realized that if my mind could make breathing hard, am I not allowing it to take over me? Not any longer!! I will crush these dumb cells!
We used the penguin cold caps. be prepared that they are incredibly cold when you first put them on--have someone massage your shoulders(I didn't try the aleve as I was worried with all the other pre-meds I had to take) it does dissipate. the worst part so far I think is that my hair is SSSSOOOO greasy.
I am sort of on the opposite spectrum as you--I had 4 kids by the time I was 30. I have decided--that I will not get sick from this--that this will NOT define me---and that I will NOT lose my fertility over it, either! and so far, I think it is working! keep your head up, you can do this! I saw a girl younger than me at Lowe's today, who appeared to have her hair growing back from chemo--there are a lot more of us young ones than we realize who have this---and your mind can do amazing things--put it to good use!
0 -
ladies, thoughts on what brand ( and where to get thermometers) I had a terrible thought into cap tem checking--what if the batteries die, or this is just wrong(although I cannot imagine anyone could have it on any colder---it was incredibly cold)so I thought I should get a second thermometer.
0 -
i haven't read all the threads, sorry. i wonder if the caps would help me with my headaches???? i am icing a lot. the caps might be easier. my whole head hurts when i get them , ummmmmm
0 -
youngmomof - My helper always brought two thermometers and extra batteries in case one gave out or the batteries failed. Definitely test the caps becasue they can be too cold. That's how I got two frostbite spots. The caps were too cold at -38C, but once we had them at -32C where Penguin said they should be, they were fine.
susan3 - I am so sorry, but I couldn't understand what you meant. It wasn't clear to me. Are you using cold caps during chemo and getting headaches from them? If so, take two Tylenol about 20 minutes before putting on your first cap. I never got a headache and I always used Tylenol.
0 -
hortense, sorry, took something to sleep and not always clear..lol no, caps are not giving me headaches. never heard of the caps before i stumbled across this site. i get a lot of headaches from meds and stuff, and stress. i was wondering if they could be better then my ice packs. and i wouldn't have to lay down, i could walk around with them on, right??????
0 -
Susan - First of all - hi neighbor! I am in the west burbs! The caps can be put on and do cover the whole head so yes - you can move around with them on. I know the caps I used (Pengiun cold caps) are not for sale. We rent them to use during chemo. There are some other one's I think you can buy...I am not sure which one's for sure. Maybe Elastogels...anyone else use something other than PCC's that can offer info?
0 -
I am helping a lady who is using Elastogel. She purchased them from Amazon. http://www.amazon.com/Elasto-Gel-Chemotherapy-Hypothermia-Cranial-Resistant/dp/B000YC9LOU/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1353243795&sr=1-1-catcorr&keywords=elastogel+for+chemo There are also a couple of others on there not intended for chemo, and probably don't get as cold I suppose.
youngmother, I had one thermometer, but carried extra batteries. Before long, your hair won't be nearly as greasy.
0 -
susan3 - These are a lot colder than ice packs. Water freezes at 32 degrees F and these caps are at -26 degrees F
0 -
Thanks! Laura, Dancetrancer, Hortense for sending messages to the Moderators asking them to post information about Cold Cap Therapy. I don't know why they are waiting... There has already been published clinical trials presented at the San Antonio Breast Cancer Symposium in 2009 http://www.abstracts2view.com/sabcs09/viewp.php?nu=p5040
http://www.abstracts2view.com/sabcs09/view.php?nu=SABCS09L_1975
susan3-Elastogel caps can be bought instead of rented. The Elastogel advertisement shows they can be used for migrane sufferers.
0 -
makingway - Following your excellent prompt about writing the Moderators about Cold Caps - thanks for posting it! - I did write them again a few days ago. Here are my letters followed by their responses:
~~~~~~~~~~~
" Information about keeping hair during chemo
from Hortense Nov 17, 2012 03:06 PM
Please post information about Cold Cap Therapy on the page devoted to "Hair Changes". It only mentions hair loss - as if it is a given, an absolute, which it no longer is - and does not say that there is also the possiblity of keeping hair through Chemotherapy by using Cold Cap Therapy. I used Cold Caps this summer and they really do work. I still have my hair and I have met others at my breast center who have used them successfully also.
I came very close to choosing not to have chemo as I didn't want to lose my hair and, in fact, had cancelled my first infusion at Memorial Sloan Kettering. I ended up moving to NY Hospital's Weill Cornell Breast Center in order to be able to use cold caps, and am so glad that I did. The center has had more than forty woman use them there and was very supportive.
Women reeling from a diagnosis of Breast Cancer turn to this site for information. They should be able to find out that there IS an alternative to the trauma of losing their hair during chemo and the "Hair Changes" page seems a logical place to have it.
Cold caps are widely used in Europe and their use is spreading here. You could post the website of the non-profit organization the Rapunzel Project as a source of information about keeping hair during chemotherapy: www.rapunzelproject.org This would allow women to do their own research and make their own decisions about if cold cap therapy is right for them or not.
Thank you.
~~~~~~~~~
Hi Hortense,
Thanks for your message. Our editorial team is actually in the process of adding that information to our core content as we speak, given the attention that Cold Cap Therapy will be receiving at the San Antonio Breast Cancer Symposium this December. Once those results are presented, our content will be updated.
Thank you!
--The Mods
~~~~~~~~
- RE: Information about keeping hair during chemo
- from Hortense Nov 17, 2012 05:48 PM
I would like to encourage you to speak to Dr Anne Moore, Medical Director of New York Hospital's Weill Cornell Breast Center at (212) 821-0550, as she is currently doing a non- clinical cold cap study at her breast center. I have been part of it. www.weillcornell.org/annemoore/
My surgeon at Memorial Sloan Kettering, Dr Alexandra Heerdt, called her about them after I defected hospitals and was fascinated by what she learned, and by the material Dr Moore sent her. From what I gathered from Dr Heerdt, she shared that information with colleagues higher up at MSK, and it seems that MSK is getting interested and may soon start some clinical studies.
Hortense, thank you for the information.
Judith and the Mods"
0 -
Awesome Hortense!!! I couldn't have said it better myself. Your message was both personal, and concise. Brings to mind one of my favorite quotes, "Be the change you want to see in the World". Thanks for making a difference
0 -
Two weeks post tx one......minimal shedding.....seriously, when I washed my shoulder length hair I always shed.....but not now. Hopefully this is a good thing. Next infusion in one week. Hopefully, the caps are working. I ordered my dry ice for next Sunday. I want to be excited but cautious.
0 -
Using Penguin cold caps with deep freezer at my infusion center. Have been vey careful with hair washing, only 1-2x/week with cool water and no heat appliances. 17 days after first TC and have had a really itchy scalp and lots of shedding today-maybe 50+ hairs that just slide right off my head. I have a fair amount of long wavy hair but getting concerned. Will the shedding slow down? I REALLY need to wash (been almost a week) but scared to lose more hair!
0 -
Tylm-Where are you having your chemotherapy? I recommend shampooing twice per week. Shampooing only once per week doesn't maintain a clean scalp. You want the pores to be clear, to aide in removing toxins etc. For best results follow my Shampooing Instructions http://www.penguincoldcap.net/ Many have said they have an itchy scalp or the feeling that the hair has been in a tight ponytail all day. Women NOT using the cold caps experience this also. Shedding can occur 14-21 days following chemotherapy treatment. It's a very individualized experience. Some have no shedding at all, others experience it after their 2nd treatment. Still others don't have any thinning until after all chemo treatments have been completed. Hang in there. By your 3rd treatment you'll probably find your hair has actually continued to grow WHILE in treatment. You might even see new hair growth where it was lost.
0 -
Makingway-I'm at UCSF. I have been going about 5 days between shampoos, but the shedding has me scared to wash this week! I wouldn't say my head feels sore like a tight ponytail, just itchy. I'll take a look at your washing instructions. I definitely feel like I have to wash tonight, even if I do continue to shed.
0
