Cold Caps Users Past and Present, to Save Hair
Comments
-
Hello all,
Day 18 here and gearing up for DC treatment cycle #2 on the 15th. Light shedding started yesterday and I am getting anxious. Thanks to shipsgirl (she has been a fantastic support!), I have not entered into full panic mode. I told her I felt like a dried up pine tree...one good shake and the needles will begin to fall! I try to shampoo 1-2 times per week, use a wide-tooth comb only in the mornings and otherwise try not to touch my hair. Roots are showing and I've used a brush-on type of colour only on my part. @Hortense - you recent posts on how much shedding you experienced have been quite helpful, thank you. Thanks to all for keeping this lively cold capping forum going!0 -
I did my TC chemo from Nov - Jan last year. The shedding was worse between 2 and 3 but continued on for 6-8 weeks after I finished my fourth chemo. It thinned a great deal but I managed to clip the sides up to hide the thinning and cover the thin spots. I never used a wig or scarf or hat. I trimmed an inch twice once in March and again in April. Then having the summer off I waited for a shaping hair cut in August. My thin spots on the back of my head, behind my ears, temples and neckline are continuing to grow. The regrowth is about 4 inches and giving me some fullness back. Still have some frizzies with Houston humidity and still not my normal hair. I color every 6 weeks with Olia....which is very gentle and works great. I too remembering I was going to lose it all.....I never did. It got dry, frizzy and thinner.......but I probably kept about 50-60 % of my hair. I am happy with the results and know that I could be sitting with 3-4 inch hair right now instead of shoulder length with 4 inch regrowth to thicken the thin spots.
Hang in there......it is amazing how quickly you look back at the experience.0 -
mc and 2lovelyB's - another trick I got from someone on this board. Use a squeeze bottle (like they have in a diner for ketchup/mustard) to wash your hair. Mix your shampoo and cool water together in it and shake well. Then you can get the shampoo all over the scalp without too much friction. My hair came out so much cleaner. Since i have long fine hair, I use conditioner on lower half (can't comb it without) and also a leave in spray conditioner for the knottier parts. VERY gentle combing. Some def. comes out, but no clumps or bald patches. And this week, so far, nowhere near as much shedding as last week. Good luck!0 -
Happy Thanksgiving Fellow Canadians!0 -
I finally got the OK to get my port out after finishing chemo in January. After chemo, rads, clean ct in June, clear mammog in Aug and clear pet scan in sept my onc gave me the OK. Have surgery Nov 1. FINALLY0 -
Yeah SchoolMom! Awesome news :0)0 -
Schoolmom, sounds like you're finally officially finished. Great news about your scans and other tests. Congratulations! I didn't have a port ( and unfortunately I have ugly damaged veins as a result) but I imagine it must be a relief to get it removed.0
-
I will be starting my chemo probably in early November. My MO will have me on 4 rounds of AC followed by 4rounds of taxol. In reading this thread, I see most women are CT. Do cold caps work better with CT than AC?0 -
welcome smrlvr - ACT is more aggressive and therefore harder on hair. I did ACT with about 70% hair loss. I was really happy with the results and never had to wear a wig or a scarf. Just when my hair got its thinnest (on my last treatment), it started growing. I am not quite 3 months pfc and have nearly 2 inches of growth already.
There are some people who did ACT who shed out, however. There is no guarantee.0 -
smrlvr - Based on what I read here on the forums, there is about a 50% of the caps being effective with ACT (at least working well enough not to need a wig). TC seems to be more effective. I am halfway through 6 treatments of TC now. I probably have lost about 35-40% of my hair but still have good coverage. How you will respond to the caps really is individual and there just isn't any way to know how successful they will be for you.
Question for those of you who used the caps previously: I'm a week out from chemo #3 and my scalp is so sore. It's that tight ponytail feeling we all know so well. I don't know what it means. I had a new helper with the caps this last time and I don't think we did as well at ensuring the caps were tight and the right temp as the previous two times. I've had a lot more shedding this last week and that pain in my scalp. I don't know if it's frostbite or if this is a precursor to more hair falling out. What does frostbite feel like? Any thoughts?0 -
Good Morning! I am really excited that I found this forum. I will be starting chemo ( 4 rounds of TC) in about a month and will be using the Penguin Cold Caps. Thanks to everyone who has already shared their story!0 -
Hello ladies! One more rad tomorrow and I am through!! Rad has been just terrible for me so I can't wait. Salon appointment on Friday to celebrate. Will get relaxer and a cut (I kept me hair but had a lot of breakage, so it is very uneven). Will try to post pics when I can.0 -
gildedcage, I think the "tight ponytail" feeling is pretty common. I had it to some extent and it just went away with no hair effects. I don't know what causes it, but I don't think it's frostbite.0 -
gildedcage,
I had that feeling too. Didn't seem to mean anything, in my case.0 -
Hey, ive just finished 11 cycles of chemo and still have hair!!! The cold cap (I used paxman) is great. After the 20 minute breakthrough of brain freeze, for me I was able to tolerate it and every week you just accept that it's part of treatment. I did not lose a single strand of hair during 2 x FEC but it started to "strand" with my 9 Taxols. It's a bit thin on top but no one really noticed except me. I would say, prob 25% of hair lost. Right at the start of my treatment losing my hair was not an option, nor was dying.....Maybe I was lucky since my hair is very thick. However, I was told by an amazing HAIR CARE CHARITY, not to cut it short as the hair you have can cover bald patches if it's long enough. I used a baby brush to brush everyday, completely organic shampoos and conditioners with low Ph, washed it only 1 or 2 times a week, slept on a silk pillowcase and used a hairdryer with cool air or let it dry naturally. I got told off by my hairdresser as I used velcro rollers to dry in my hair and give it shape but they worked!! PS I took a painkiller 1 hr prior to the hat being frozen on, but to be honest sometimes I forgot to take it. It's really mind over matter. You need to imagine the coldness being a desert with heat radiating down - visualisation really works for me. Good luck to those who are going to try it - never give up!!! Re pain on scalp - for me I think it's the hair trying to regenerate which makes the scalp sore and tender. In the UK, we have a Si Fi show called Dr Who, who is always regenerating his whole body and he is always in pain.......so I base my theory on that!!!!!!0 -
So great to see another person with success with the caps. It will be thrilling to see the day when we have the technology in place so that no one needs to lose their hair to chemo. Congrats to those of you who finished up your treatments. I can't wait to join you!
The tight ponytail feeling was gone when I woke up this morning and my hair is still there so I guess it was just a temporary thing. I got a little nervous because so many who lost their hair to chemo reported that feeling before it started coming out in clumps. I'll calm down now.
0 -
Daye, you came to the right place if you plan to use cold caps. Based on my own experience and others who have posted on this forum, the success rate for those receiving TC is pretty high. I'd estimate at least an 80% success rate if not higher. I define success as not feeling the need to wear a wig or other head covering. Please keep posting and we'll do our best to help you keep your beautiful long hair.
Tmb, can I offer an early congratulations?!!!
0 -
I was interested to find out that New York Hospital's Weill Cornell Breast Center is one of the five hospitals taking part in the Dignicap trial. About four women are enrolled so far out of the 30 needed to complete the study. So if anyone is interested, she should contact Dr Anne Moore who is the medical director of the center. She told me they are much easier to use than having to change cold caps every 30 minutes. It is too early to know how the Dignicaps are doing. They do not chill the scalp down as far as cold caps, but if they work the FDA might approve them.
I used Penguin Cold Caps there during the summer of 2012 and had good success. I lost possibly 35% of my hair - probably the oldest hairs, which started regrowing right afterwards. Today my hair is so thick and healthy even Dr Moore was amazed.
You do not have to live in NYC to go to hospitals there. I would come in with my husband and stay at a nearby hotel. The Bentley is right across the street from the Breast Center, and NY Hospital has its own hotel on 70th and York Avenue which includes full kitchens in each room and is also great for going to Sloan Kettering Cancer Center which I went to for surgery.0 -
After reading some posts on other boards, I wish EVERY one had the chance to use the cold caps.
Gilded - congrats on being half way through! Sounds like the tight feeling might be normal. I will share if I get it too after my 3rd tx next week.
Daye, I would def. recommend it. You look like you have beautiful hair. Just do not color, cut or do anything to it during this next month that could weaken it. I had some shedding between my 1st and 2nd Treatment but nothing so far and I am 35 days in or 14 days past my 2nd treatment (TC) . My one friend told me I look no different than I normally look. Which made me laugh because I used to wash, blow-dry, style, color, hi-light, and sometimes use a curling iron to give my hair body and now I do nothing. It just hangs straight. The truth hurts
My husband and sister are pretty militant about the caps, so make sure you have good helpers. If you can get 2 people, that is ideal. Also, if you haven't read about it yet, make sure you ice your fingers, toes, and eat popsicles. It helps ward off neuropathy and mouth sores. And if you have an electric blanket that really helps. And a scarf. My sister brought one and it did the trick. Although you look pretty funny. The coldness is bothersome for the first few minutes, then, believe it or not, your head feels warm.
Hortense - I seriously can not believe they have to troll for volunteers for the Dignicaps. I would have jumped at it if they had one in the DC area.
Hope everyone has a good day!0 -
Hey Cold Cappers! I have not posted in a while. Just checking in and offering support and prayers to those still going through chemo. I used PCC's with TCx4 about 2 1/2 years ago and had great success. I have to say my hair is healthier and thicker now than before treatment. I still only have to wash 2 times a week.....it never gets dirty. I still use sulfate free shampoo/conditioner and use Naturtint to color my hair. I know it feels like you will shed all of it, but have faith. The caps work for so many women. I too dream of the day when cold caps will be a choice for everyone. Keep getting the word out there!!!
Hugs!0 -
Finished radiation!! Yay! Celebrating tonight.0 -
Congratulations Tmb!! I am 14/33 and can't wait!!0 -
Thanks for all of the support! I typically highlight my hair every 8 weeks, so I was going to get some low lights next week so that my roots don't look as bad while they are growing out over the next 8 months or so. The lady that I spoke with at PCC said I could color my hair up until two weeks before treatment, but it still makes me nervous. I will have my first chemo on Nov. 22. Does anyone have any advice on whether coloring my hair next week would be ok? Thanks!!0 -
I colored mine a few weeks before chemo started. I did OK.0 -
Daye, I colored mine less than a week before beginning chemo, and had no problems at all. Your plan sounds fine to me. Good luck with the cold caps.0 -
Daye - Please do not color your hair. Please be sure you have some visible growth of natural color even though you might not like it. It is essential that chemo not hit hair that has been chemically treated or it will damage it.
I learned that lesson the hard way by lightening my roots six days before starting chemo and suffering lots of breakage later on. I can not tell you exactly why that happened, but I think it is as simple as some chemo will hit the hair shaft and it's better to have it hit strong, healthy, natural hair rather than hair that has been already weakened by a chemical. As my hair grew longer during chemo I could feel a kind of small ball at the junction between the natural hair and the lightened hair, so clearly something happened. Whether it happened at the scalp line or below it I could not tell, but I suspect below.
Once my roots were several inches long my hair began to break off at those balls. If I squeezed or pinched one it broke right away as if it were brittle. While I kept complete coverage, there was an uncomfortably long period where my hair got very thin in volume the lower down it went. I was forced to keep trimming its length until it was up to my shoulders. My avatar, which was taken 30 days after my last T/C chemo treatment, and after two trims, shows it starting to get thin in the longer part - you can see the dark shirt through it.
The damage was entirely my fault as I made the foolish decision to do my roots when I should have left the 1/4" natural growth that I had at the time alone. My hair also broke off around my face until it looked as though I had cut it off at the line between natural and lightened hair. I had to wear the rest of my hair pushed back behind my ears to disguise the breakage. I was not happy and would not want anyone else to experience what I did. I carefully waited the full six month period after chemo, as recommended by Penguin, before going to the hairdresser and having it colored again. Today, six months after the worst period of breakage, my hair is uniformly thick and lovely again as the natural hair that grew throughout chemo (which I have had lightened) has reached my shoulders.
Your hair will continue to grow during chemo and what you may lose through shedding will start to regrow with a vengence about two months after your last chemo treatment. I take both Biotin and liquid silica (BioSil) for my hair and suggest that you consider doing the same once done with chemo. My salon has been so impressed by how fast and thickly my hair has been growing that it is recommending BioSil to its other customers.
Good luck!0 -
daye
I colored my hair 4 weeks prior to chemo to go from red to brown, my natural color. My bangs are now down past my nose and my hair us hanging in. The color had no ammonia or peroxide.
It's probably safest not to color, but I'd be pretty unhappy if I had 3 inches of brown roots with red ends.
I've got one more treatment to go. My brows are almost gone but my hair looks great.0 -
Hi Ladies,
New to here. I was told that I will start chemo in about 2-3 weeks. I am interested in this cold cap thing, but not sure how/when to start. If anybody can just guide me little bit it will be highly appreciated!
Hugs to you all!
J0 -
Some pics after my hair appt yesterday- approx 3 months PFC! My hair used to be longer, but I had a lot of breakage. Used to be a bit longer than shoulder length- now is chin length. But it's still there and that is all that matters!
0 -
0
