Cold Caps Users Past and Present, to Save Hair
Comments
-
CousinItt, I'm doing TCH as well. I found this thread to be very helpful - the gals on here are SO smart, helpful, and encouraging:
taxotere,carboplatin and herceptin
ali68 - I am so sorry the caps didn't work well for you.
Hopefully they will at least give you a faster regrowth of your hair. < hugs > 0 -
Thanks to encouragement, I managed to wash my long hair and get it reasonably clean. I don't like the conditioner Cold Caps recommended, DermOrganic, as it leaves my hair tangled in rat tails even though it rinses out well. Getting those tangles out was not easy and was very frustrating, plus it left my normally straight hair kind of curly, and not in a good way. I also lost considerable hair because of the struggle to painstakingly comb out and/or hand separate the tangles without pulling on the hair, so I am not happy.
Next time I think I will use my usual conditioner which comes with my L'Oreal hair color. (Of course, I am a natural Blonde!) A small amount rubbed between my hands and run through my hair, then rinsed out, leaves my hair perfectly detangled and easy to comb.
I have also used "It's a 10" to deep condition successfully which also detangles perfectly. I think I am going to contact each company to try to find out what PH each product has. There's nothing bad sounding in "It's a 10".
I'm on day 13 after my first treatment and wondering what will happen. Will my hair stay, go or end up somewhere in between? The woman who helped with my caps and who had helped quite a few Cold Cap users said to expect some shedding between the 14th and 18th day, I think.
0 -
Hortense, I would think that you could use what ever conditioner works for you, but I just would not put it near your scalp. After all, you don't want to have to tug on your hair to comb it out.
I can remember being where you are, so scary, but just follow the PCC protocol and you will keep your hair.
0 -
Mdg, I was considering the Naturtint hair color. I would have to order it online and it seemed the color samples in the browns looked like they all had a reddish tint. What color did you use and did it have red tones?
I had used Clairol natural instincts with no ammonia before having chemo but afraid to use it now (about 10wksPFC). I was told to wait 6 months before using my brand of hair color. I've been using Ion Color Brilliance found at Sally's which is pretty good for a semi-permanent color. It turns the greys blondish.
I think most of us end up with hair that is different than it was before chemo. Mine is thinner and dry. Even though I didn't lose my hair, I have to realize it wouldn't be like it was before. It would have been great to end chemo with a full head of shiny, healthy hair but what I have is a good compromise. Mentally, I can deal with what I have much better than starting over from baldness.
I just finished radiation last week and will start Tamoxifin in a couple weeks.
0 -
Hortense, I replied earlier and now I don't see it. Grrrrr!
Anyways, congrats on getting through that wash (and combing!). I think it should be ok to use the conditioner as well, but of course, I'm still a newbie, so take my advice with a grain of salt. The reason I say I think it may be ok is b/c I went "off protocol" and used a spray in hair reconstructor that I've used before (my hair used to break off). It totally repaired my hair in the past. It made it much easier to comb out (I tangle like the dickens), even though it was still challenging. And my hair already looks much healthier. Hopefully this won't come back to bite me in the *ss. It was a risk I felt ok taking and so far, so good.
I think the shedding varies by regimen, but so far for me, I started shedding more I think a few days just before my 2nd TCH (days 18-20?). The amount of shedding has been about the same since, until about the middle of TCH 2 -3 (3 is tomorrow). There were a few days where I noticed more strands of hair on my arms, in my silk cap, etc. Then it went back to my previous level of shedding - just primarily with combing, washing, etc. Someone on another board who didn't use caps said they kept most of their hair until after TCH3 - then she lost most of it, and it was all gone by tx #4. Sooooo....I'm still quite nervous about what to expect after #3 tomorrow. Fingers crossed, same for you!!!
0 -
Thank you dancetrance. I am going to try to wash my hair again in the morning as that will be the fourth day. I called L'Oreal to try to find out the PH level of the conditioner and was told that information was "proprietary" and couldn't be given out, but that it was PH balanced. Whatever that means to them.
Neutogena had no problem telling me a PH level when I called about a product of it's, so it makes me somewhat concerned about what L'Oreal might be hiding.
I'm hoping to get my hair to rinse clean and straight the way it usually does, that way it will dry looking better. The less I comb it the better.
0 -
Dancetrancer, you're half way there. Congrats and keep hanging in there!
0 -
Hi everyone. Re: conditioner: use it, especially if you are prone to tangling. Conditioner will help moisturize your hair, and help you detangle when you comb -- which in turn helps keep from pulling the hairs.
I used Trader Joe's NourishSpa hydrating conditioner. Even on days when I did not wash (I washed once weekly, which was the protocol at the time -- the every three days is new to me and would have been far too much for my hair to handle), I rinsed, and in the latter phases, I would sometimes add conditioner to the ends of my hair just to moisturize.
Hang in there everyone!
Susan
0 -
Hi everyone, went to my cancer drop in centre and spoke to a few people about hair.
All said the key to the machines which I used was using them longer than they said.
This makes sense as the first time I used them I had it on for six hours because they couldn't find a vein. I didn't lose hair till second chemo but saying this I would have had to have a machine at home. No one every said I would need to do this but I think you do.
Hope your all doing well and I have hair growing again so I'm pleased.0 -
ali, That makes sense. I wore my caps for a total of 7 or 8 hours each time, with great results. It's a shame that your center did not know more about the machines.
0 -
Ali - that makes a lot of sense. My last TCH, the carbo was not done infusing til around 4 p.m. So I went home with the dry ice and iced another 4 hours per the protocol til 8 p.m. At least now perhaps you have found an explanation? THRILLED to hear your hair is growing again and hoping it grows in and covers/mixes faster than if you hadn't done the caps!0
-
Had scan after chemo got "complete Response" I'm happy.
0 -
ali, that is FANTASTIC news! Congratulations!!!0
-
Ali, that is reason to celebrate! Congrats! Lisa
0 -
Marie3: I used the light chestnut color. It does have some reddish tones but not pronounced. The last photo I posted of my hair shows it freshly colored. My hair is usually even darker than the light chestnut color - my roots grow in darker mixed with some grays. I like this color. My hair has felt very healthy - much more healthy than before chemo. I color it every 4 weeks and it is not dry or breaking. I did not use this type of color until about 6 mo's post chemo. Before I used this, I was using Clairol's Beautiful collection which is a temp color. I didn't like that as much but I wanted to wait to use permanent color.
0 -
Thanks mdg. My hair color is similar to yours. I will try the light chestnut. I am no longer shedding so may try it soon. The Ion color brilliance I have been using is a temporary ammonia and peroxide free color similar to Clairol's Beautiful collection. I just used it again this morning and between getting busy on the computer and getting a phone call, I left it on for over an hour. It certainly did not color my greys a medium brown but got them a light brown/blondish which at least lets them blend in better. The extra time helped.
I wanted to let you know I had discovered your blog quite a while ago and read through the whole thing. It was so nice to read your story when I was about to go through chemo myself. I'm sure you have helped a lot of woman in getting through this difficult time in our lives!
0 -
Marie - glad you got my message about the hair color. I notice it does fade a bit but the grays still stay colored. I just notice all of my hair looks lighter after 4 weeks but I color every four weeks anyway so it's not a big deal to me. The grays stay covered which makes me happy
Glad the blog was helpful. It was just my raw emotion coming out. I have not had time to blog much lately - I have been super busy with projects at home. Knowing someone has benefited from my blog makes my day! 0 -
Has anyone else had any frost bite from their cold caps? I have had a 1/4" dark line just above where the moleskin was on my forehead which is drying up and peeling off lately, leaving paler skin underneath. I also have had a very tight feeling on the top of my head for the past week or so and today noticed several sensitive spots that appear to be peeling. I am wondering if areas of my scalp peel, as seems to be happening, will the hair come off also?
0 -
Hortense, I have not, however it was a big fear of mine before starting the caps (uh, - 30 C is COLD!!!), so I tried to see if I could find some stories about it, etc. I found a FEW blogs of people on line saying it happened to them. They did lose their hair in that spot of frostbite (area turned black, and it peeled off with the hair in that area). I hope you don't lose much, if any hair - perhaps it will be minimal, if any! Maybe you should ask Geralyn about raising the temp for your caps a bit?0
-
Hortense~
I did not get frostbite but I know some ladies did at the same time as I was doing the Caps.
Geralyn would probably be a good resource as there are so many pages in this thread it would be time consuming to go back to 2009...
0 -
I will check with Geralyn. It is very obvious today that a large area is dry and peeling, however it seems to be just a thin layer of very dry skin. The hair itself seems fine. It's just odd feeling and looking as the flakes are fairly large and I have to work them gently down the length of the group of hairs involved to get them off.
I had noticed a few other ladies say that they had big flakes, but they seemed to have attributed them to having had a dirty scalp because they were not allowed to wash as often or as vigorously as they used to. I now think they must also have had a layer of skin die and peel off. Sort of the way a sun burn on the top of the head peels. It also explains the tight feeling I have had on my scalp ever since using the cold caps.
0 -
Hortense, a couple of women have posted about small patches of frostbite over the last couple of years -- it seems to occur (when it happens) at the top of their forehead or along their part line, where the hair is already thin. For future infusions, you can put a piece of gauze or silk over this spot to protect it further. Meanwhile, it is a relatively thin area of the upper layer of skin. It will peel, and if there is hair there it may get patchy for a short time, but the hair will regrow. Keep hydrated (hydration works best from the inside, so drink plenty of water!). Aloe can also be soothing for the dryness.
When I changed my cap every 30 minutes, I made sure to shuffle my hair around my part line each time, so that the part wasn't taking a direct hit each cap. I had neither frostbite nor bald patches on my head.
Hope this helps,
Susan
0 -
Hortense, I remember now that I had that happen too. I wondered at the time if it was frostbite. It only happened once, and I think my helpers had forgotten to wipe the moisture off of the caps a couple of times that day, and they felt way too cold. I ended up with a big area of dry skin that I sort of pryed up what seemed like thick pieces of skin and pulled them gently down the hair. I never lost any hair with it though. That area was fine before my next treatment so I didn't have to do anything special there. Just make sure the inside of the cap is wiped off every time you have a cap change.
0 -
Hortense - I too had the flakes you speak of. Didn't think about it being frostbite, just figured it was dirty scalp flaking like dandruff. Hard to know which it is for sure, I guess. I'm not getting the flaking much at all now that I am using less shampoo/mixing it more with water and making sure I rinse my scalp very good.0
-
I am certain it was frostbite. I was careful to change my part between caps and I know my scalp didn't get very red as my helper was watching carefully. However, it is clear that the entire top of my head from forehead to crown must have gotten a bit too cold. It had been feeling almost numb for the first few days after using the caps - and my forehead was swollen, then the top felt quite tight for a week and now its very tight and dry with peeling spots exactly like the one described by Laura5. For the past few days I have been carefully working pieces down the hair shafts. I look like I have giant dandruff, only it isn't dandruff.
So far my hair seems ok, although I am experiencing some shedding; but, I was told to expect some shedding right about now. It's the nineteeth day after my first chemo treatment.
I haven't contacted Geralyn yet, but I will after the holiday.
0 -
Hortense - that sounds really uncomfortable - eeks! I bet she is going to tell you to increase the temp a degree or two. That does indeed sound like frostbite! Good gracious!0
-
Can you use the dry shampoo with COld Caps? I'm trying to only wash once a week but my hair gets GROSS!
0 -
I don't think you can do that but check with Geralyn. It will get better...when I first started chemo it was gross for several weeks...it got better. I finished chemo a year ago and still only wash 2-3 times a week and I workout daily. Hair never gets greasy anymore. Hang in there....
0 -
mdg~
My hair also...did chemo almost 3 years ago and now I only have to wash 2-3 times a week.
I used to wash my hair everyday!
0 -
lbrewer, Frank told me not to use dry shampoo, but as the others stated, the chemo will soon dry out your hair so the weekly washing will be a nonissue.
0
