Cold Caps Users Past and Present, to Save Hair
Comments
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Heading out this morning for taxol + Herceptin #11. I'm so ready to be done! I have had very minimal (if any) shedding, for which I am very thankful, although I keep waiting for the proverbial other shoe to drop.
I do have very long gray roots. I have some Colormark, but that applicator is so tiny it's hard to use and not very effective. Did any of you use anything else to cover gray roots? I know there is something you spray on - my colorist mentioned it to me. Do you think that would be OK to use after chemo is finished?
Also - how soon can I get my hair trimmed? My hair style is usually relatively short and requires blow drying to look right (which of course I have not been doing). It is very scraggly right now!0 -
skimommi, Keeping my hair made all the difference in the world. I would use Penguin Cold Caps again in a heartbeat, (but pray I never need to).
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So today has been the biggest hair shed day so far and it's scary. I'm 5 days away from treatment #4 - the last one. Washed my hair today so expected more hair but good grief! I've been picking hair off my sweater all day. And this was after big shed in the shower and while combing. Is it going to continue at this level????
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Hi all - thought I'd give an update. I continue to lose excessive amounts of hair. Not only nape of neck and around ears, but now have bald spots on top of head. My hair is dark so the bald spots on top are very noticeable, as my dear husband points out. The most hair I have kept seems to be around face which I guess I should be grateful for. Since I'm only midway through chemo, I really expect to have very little hair left by the end. I need to find a way to cover bald spots (already using a color stick to cover grey)
I actually go to a hospital which endorses cold cap treatments and has the caps and refrigeration on site. I was recommended as a good candidate based on my hair type and chemo treatment. i am using an experienced helper and following all protocol.
I had very thick hair to begin with and would not suggest this for anyone without lots and lots of hair. I read all the strong endorsements for this treatment. From my perspective, I am past the point of no return. The jury is still out regarding whether I would recommend this to others.0 -
Loafer, I wonder if your facility is not keeping the caps cold enough. Do you know what temperature they are when placed on your head? Also, are they Penguin?
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Loafer-Are you using the gel-filled headbands? They prevent hair loss from around the ears and nape of neck. If you've developed bald patches the caps were too cold! What hospital are you at? A part of the 'protocol' is not cutting your hair. This could be contributing to the additional hair loss. I can't recall who, but someone had posted that they had a few bald patches. Once their new hair grew to @ 1 inch the patches were no longer noticeable. Hopefully this will be your case also. The hair can still grow while in chemo. Most people believe that having thick hair is more of a benefit for those using the caps-it's actually the opposite case. Thick hair acts as a greater insulator of the scalp, reducing the amount of heat transfer to the cold cap.
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Thanks everyone. I am using penguin caps at Beaumont Hospital which did a successful clinical trial on this - so I'm confident temps are accurate - they are gel filled white caps. I think I would have benefitted by the head bands to cover the nape of the neck. The caps seem to leave that area exposed when they sit on my head. This is why the back of my hair came off in clumps - I had no choice but to cut it off - which has helped. My onc said the same thing about thick hair insulating the cap. He is a big proponent of cold caps and fully endorses them. I do have grey coming in which is a good sign too. Can someone tell me the supplement recommended and dosage. I have not done this and it may help. Thanks!
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I too have grey roots about 3/4 inch which is reassuring since this started 11/5. Typically it grows 1/2 to an inch a month and then I stopped dying it about 2 weeks prior when I decided to go with caps. So growth is 5 weeks worth. Lots of shedding day 26 with washing but I too have thick past my shoulder hair. Virtually no shedding from 11/5 to 11/21 so I have to know this is catch up. Basically my brush would be full of hair daily so have to remember that.
Which supplement are you talking about?
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Many gals took biotin and silica. Talk to your onc first. I don't think I took any until I was done with chemo.
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I take 1 T daily liquid silica from the health food store for hair/nails. My onc. approved it.
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Loafer - I am so sorry you are not having the success you hoped for.
I think I was the person makingway mentioned who had bald spots that grew right back in. They did, and densely. Mine were caused by frostbite and the hair that came out from those spots often was in small clumps held together by some kind of pus-like gunk. The spots also had large flakes of dry skin, up to half an inch across, that came off, some times with hair attached, sometime simply sliding down the shafts of hair left on my head like extra large pieces of dandruff. Yes, I know, TMI, but it could be Loafer has the same symptoms if she has frostbite. I think her hair will fill in quickly.
New hairs seem to be almost colorless when they first emerge so she might not notice them. They gain color with length. They first can be felt as slightly prickly things. The rest of my hair continued to grow normally all throughout chemo thanks to cold caps. I am 7 months past the day of my first treatment and have natural colored roots that are about 4" long now. I have straight hair and the new hair came in straight also, no "chemo curls", though it is noticeably darker in the frost bite areas.
I used blue Penguin gelcaps, not white ones, with the gel browstraps wrapped just underneath them which insured that I kept the hair in areas below the caps that weren't entirely covered.
Are the white caps any different from the blue ones?
I, too, wonder about the temperature used. How carefully were they checked just before being put on? Does Penguin recommend anything colder than -32C for thick hair?
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My recommendation for long thick hair were -32 to -34. The first time with my helper we stuck to the temp ridgedly. For some reason the second time when we got home my friend had trouble finding caps that cold and had to ice them with bags of pelletsbefore putting on . I think there were times they were not down to -32
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Thanks for the info regarding silica. I will ask my onc about it. I did not experience the frost bite conditions you mention Hortense. No flaking, clumps or puss. Just large amounts of hair loss all over and now have bald spots at crown and under hair around ears and neckline. I can hide most of it with the exception of the crown. Will need a powder or something to try and disguise that. The hair that I have is silky and smooth despite washing only 2 days or so per week. Even an easy comb through in the morning collects massive amounts of hair not to mention the constant shedding all day. Appreciate everyone's support and advice!!
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Here's a current pic of me. I am mistaken, the caps I am using are blue with white inside. I also had a previous pic with a cap on and it really was on top of head with all my long hair below. The additional strips may have saved the long hair. I have a short cut which people think is short and sassy. Not exactly what I was going for, but it's easy, and I can work. On Day 29 and holding out hope.
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Loafer - I went back a few pages to try to see where you were in your treatment. On Nov. 26th you were at the 21st day of your treatment which is when people normally do start to shed heavily from all over their heads. It is normal at your point, though certainly distressing, to have a handful come out in the shower and strands trailing down your clothing all day long. You have just reached the heaviest part of shedding right now, between the second and third treatments.
It sounds like the caps you are using do not fully cover your head so that you unfortunately have lost all the unprotected hair around the base of your head, but it sounds as if, aside from the top of your head and that band, you may well keep the rest of your hair.
I kept shedding fairly heavily until about a week and a half before the fourth treatment when it slowed down, and it made me very nervous as my old posts show. In my case, heavy shedding started again three weeks after chemo ended and lasted another thirteen weeks, but not everyone seems to have that happen. Some do not shed at all. I ended up losing 30 - 40% in volume, but I still had hair all over my head. Like you I shortened my long hair to help make it look fuller, but I did it slowly, half an inch at a time with about ten days in between each trim.
After chemo my hair looked pretty awful, but some of that seemed to be the effects of chemo. It was very dry and damaged looking, and the new growth was almost wire-y feeling on top. I started using Nioxin shampoo and conditioner #4 for chemically treated noticeably thinning hair and I have to say I see a big difference. It looks fuller, has a shine and even my husband says it suddenly is looking better. I usually tuck my hair behind my ears which makes the longer part look fuller, however I can clearly see new hair growth which must have started to come in during chemo, judging by the color and length of its unbleached roots, which is now down enough to begin to fill in.
I suspect all cold cap users hair continues to grow during chemo because it is protected. I also think that the hair that falls out in shedding grows back fairly quickly because I can see lots of new hairs that are about an inch and a half long poking out in unruly ways.
As bad as everything seems now, I would like to encourage you to continue with the caps because I think they will help you keep what you do have and that using them will help kick start the growth of new hairs from the follicles that shed. I believe the folicles that are under the caps will start regrowing before you end chemo - months before someone who went bald hair begins to regrow.
Best of luck!
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Loafer, maybe you lost hair earlier than some of us. I did lose hair all around my face and nape of neck. By the end of chemo I had no sideburn area hairs. The hair around temples was super thin but only noticeable when I pulled my hair back. I didn't have any bald spots but when my hair started growing in again I had a small set of bangs in the front, large sections near temples and side burns and nape of neck that grew back in. I also had a decent size clump on the top of my head in back that was growing in - I only noticed it because it was sticking up. Maybe you lost it earlier....my loss in these areas was very gradual. I consider my hair a success. Most of us lost hair in these areas.
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Hi ladies, Im new to the forum and after reading some of the recent posts am a little nervous about trying the cold caps. I will be starting treatments on Wednesday which consist of 4 rounds 3 weeks apart of taxotere, cytoxan, and adriamycin. I have long straight hair that falls to the middle of my back. Was hoping I would be able to save it with the use of cold caps. Has anyone had any success with the same regimen??? I have already ordered them, they are set to be here for Monday and already have my team in place to help.
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Who are the ATC girls? I know there are a few gals on here that used that chemo. I only had the TC part. Anyone remember which gals used them with ATC so 3131 can send them a PM ?
Good luck with chemo. We are here to support you and answer questions......I check back often as do many of the past cold cap users to support the newbies. Where are you located? I use to be in Detroit but now I am in Chicago.
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Loafer-I suggest you have your helper massage the cap frequently while it is on to assure contact. The same thing happened to me but weeks pfc and combover hides it.
Also, I would wear the cap from the freezer a few times between infusions. It was warm here and it did seem to slow what seemed to be a constant steam of hairs letting go. I am still shedding more than I would like but I went to a party and no one knew I just had chemo. I am obsessing about your hair now, so please keep is all posted.0 -
Thanks Tuka! Going on my first business trip tomorrow - which I'm a little nervous about - since I'm in the middle of second cycle. Haven't seen the people since I was diagnosed with cancer so I'll see their responses to my hair. Planning on bringing plenty of purel and a face mask for precautionary reasons - cant afford to get sick! Will be back on Thursday.
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mdg I just finished my third treatment on Wednesday and noticed my hair is thinning behind my ears. I'm shedding all day as well should I be concerned or do you think I'm mostly in the clear by now. last treatment is December 19th so close !!! Is it bad to wash my hair twice a week or will that not matter with the shedding or should I cut back to once a week until treatment is complete? I'm getting nervous and my sister who used the caps too suggested I come on the board to ask people who had the same chemo I'm having. thanks
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Lisa - it's hard to say. Everyone has been different. I noticed thinning in those areas and my hair continued to shed after I completed chemo for a long time. Many others had minimal shedding after their final chemo. I only washed once a week but I was not working at the time and I really didn't have to go too many places that I cared about what my hair looked like. I would wash it on the weekend so when we did social things, it was clean. Other than that I wore it loosely pulled back while I worked out or in a thin, elastic headband when I was home. When it started shedding and falling on my arms all day, I wore it pulled back loosely. At least this way I would not think about it all day as every single hair fell....I only had to deal with it at night when I let my hair down. As far as the shedding behind the ears - with hair down, it was not noticeable. The only places that I noticed a lot by the end of chemo was the temples/side burn area but I only noticed it when my hair was pulled back. If it was down, you could not tell. I know this is hard....remember, when you look in the mirror, you still have a FULL head of hair. A bad hair day is better than a NO hair day. Hang on....you are almost done!! You will start the new year cancer free WITH hair!!!
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Was your hair very snarly when you washed it? Did you brush the ends at all? My hair is long about to my shoulder blades and super snarly. On another note did your teeth ache after chemo and did you get very bloated from the steroids? Any suggestions if you did experience these symptoms! Thank you for your thoughts and suggestions I'm so glad I joined this board. Lisa
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Lisa, my teeth did ache all during treatment. Your gums are a lot more sensitive, and you may find that flossing is not an option right now. Try getting some biotene rinse, and using biotene toothpaste with a very soft toothbrush. I scheduled a cleaning 4 weeks after my last treatment to remove the plaque that had built up over that time.
The steroid bloat is normal, and may not resolve until weeks after treatment ends. Maybe talk to your MO about it, and see if what you are experiencing is excessive?
I have long hair, well past my shoulders, and found that spraying a leave-in conditioner while wet, and combing with a wide-tooth comb helped. I rinsed my hair in cold water almost every day. It made me feel refreshed and cleaner. Are you sleeping on a satin pillowcase? That can help prevent snarls, too.
Good luck, you'll get through this, and then be an inspiration to others.
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I am between rounds 2 and 3 and the shedding is daily. I have shoulder length and underneath it gets tangled for the first time the last few days. I discovered it is loose hairs that have already detached and tangling up sort of matted up. When I gently detangle, they come out maybe 10-15 at a time.
I know it is a process and I have super thick long hair that is going to thin out. No one notices really but me. My adult son says it just looks like I washed and did not blow dry ( I have wavy curls and try to just finger fluff it and do not brush or comb at all. )
I keep telling my self, I have hair, I have hair......
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schoolmom - You do have hair! And, it will stay inspite of what seems like a lot of shedding.
Think of it this way, even if you loose 200 hairs a day for 30 days you have only lost 6000 hairs out of the more than 100,000 hairs everybody has on their heads.
Lisap74 - I also had water retention periodically during chemo and it happened again after my last treatment. My doctor and nurse told me many people get it but goes away. My feet and ankles would get swollen and look like a stuffed animal's, all soft and round. It was so strange to see puffy looking feet and ankles when I usually have very slim and boney ones. My legs from the thighs down would feel very heavy and almost uncomfortable.
I also felt bloated and was gassy. I couldn't help passing gas all day long which was embarrassing. I still get gassy, but not nearly as much. I think it is a very common SE.
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Thank you Hortense for putting the numbers out there!
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Thanks ckk! So with the caps I can use leave in conditioner ? I'm afraid to brush with a comb since its shedding so much for the time being . So it's ok to comb through often? Did you lose any of it? How long after last chemo did you go to regular hair care like washing and brushing and highlighting etc?
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Lisa, I used a spray leave-in conditioner to cut down on the tangles. I think that many women have used it. Do you have a really wide tooth comb that you can use? Support the roots with one hand and comb gently up from the bottom.
I lost about 10% of my hair in total, I think, and most of it right after the first treatment. As it was explained to me, you lose the hair that's in the final stage of growth cycles. I actually lost very little hair after my last treatment. I kept waiting for the "big shed", but it never happened. I colored with a semi permament, ammonia free dye at 3-4 months after my last treatment. I went back to completely regular hair care at 6 months, although I now go to a "green" salon that uses much less harsh chemicals (no ammonia, no ppd). My hair was very, very dry for a long time, and my (former) hairdresser really wanted me to cut it off! Nope, wasn't going to happen. When I swtiched hair places, my new hairdresser told me to wash only once or twice per week, deep condition at every wash, and rinse and condition my hair every day. She recommended Kevin Murphy products, and they were expensive, but my hair looks really good again. I still only wash at most twice per week.
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I am using cold caps at Beaumont as well, have thick hair and am having very good results. I am coming up on my 5th of 6 treatments (carboplatin, taxotere and herceptin) and still have full head of hair. The person I use to put on the caps uses not only the gel strap, but at least 3-4 other straps to keep the cold caps tight and close to my head. Make sure all straps are used each time the caps are put on your head. As for supplements, I take 1500 mg of silica per day. Have no idea if this is making difference, but I figure it can't hurt. Hope this helps.
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