Cold Caps Users Past and Present, to Save Hair
Comments
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Arlene,
So glad you're hair is doing ok. Been out of the loop for a while - why is your Herceptin on hold?
take care,
Lucky
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lucky, what brand of cold caps did you use?
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No hair has come out today and my bob looks good. Will I be able to continue even though my hair is very thin on top and if you lift the hair I have bald patches. Is it dangerous to your head if you don't have enough hair? At best I have 4 more or worse 6 chemo's to go.
On a brighter note my back is better and DH and I went for dinner and I could eat a whole meal with a small glass of bubbly. Well it was my birthday.0 -
Lucky60: Low magnesium, zinc, B vitamins, and iron levels can all contribute to hair loss. (After I'd finished my chemo, Frank began recommending taking iron after PFC; many women have done this and reported that the PFC shedding stopped quickly.) You might want to have your levels checked, and add any needed supplements to your diet. But otherwise glad you are feeling great!
Susan
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ali68, I read something about putting gauze or something similar over the bald patches so you do not get frost bite there.
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Laura,
I used the penguin cold caps.
Lucky
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Not sure if this is going to be posted correctly, I may have hit reply but I wanted to put my own message out. My name is Debbye, I am using penguin cold caps. I have finished two THC treatments and my next is Friday. I am 17 days into 2nd treatment , haven't seen any hair loss and very minimal shedding; however the past two days have been filled with constant scalp tingles (I guess that is what you call them). Does anyone have any advice for me regarding tingling?
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Hi Dgreg, nice to meet you. You have been very lucky and me unlucky. My hair started falling out in clumps on day 3 of second chemo. Every time it started with tingling and pain, I had to have my long hair cut in short bob. I really hope you have better luck than me.
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Dgreg, I was on the same chemo regimen as you are and also used the Penguin caps. At times I felt the weird tingling sensation too, but I made it through all 6 treatments just barely shedding at all. I think the tingling is pretty common.
ali68, I'm sorry that you lost some clumps. Did the cap not fit well in those areas? Hopefully you are done losing hair.
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Debbye, the tingling is very common. I had it to lessening degrees with every treatment. I also had aching. Hair can really hurt!
I am 4 weeks past my final chemo and have 95% of my hair with very little shedding. All that tingling and aching never led to any discernible hair loss. I did lose a half dollar sized patch above each ear with no associated tingling or aching.
I know just how you feel - I was convinced after the first couple of treatments I was going to be the one person that the caps didn't work for. Happily I was wrong!
Hang in there - you will worry about this less each treatment cycle.0 -
Has anyone ever heard of anyone losing all of their hair after chemo i.e. after successfully keeping it during chemo with the Penguin cold cap system - only to lose it all later? I'm five weeks pfc and still shedding - taking a bunch of supplements for iron, vit B, silica etc. but getting really nervous.
Help!
Lucky
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My chemo is FEC is that what most people are on.
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My cap was on very tight but had it on the first time for about 4 hrs and this time 3hrs.
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Lucky how many sessions did you have? I'm having 6 or 8.
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ali68, I was instructed to wear the caps for 50 minutes prior, during, and 4 hours after finishing chemo. I think this is common procedure for Penguin cold caps.
Lucky, I think a lot of women said they had the worse shedding after they were done. I know I did, but it has really slowed down. I am 2 months pfc. and look like I didn't lose any.
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Really they say with mine, 30 mins before chemo, during and two hours after. Bloody hell that's why mine is falling out.
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Have just been on Can-D profile and seen her pics omg they are great. She was on the same chemo as me and going to have. I have read some of her comments on how much her hair thinned. So I feel a bit better and I'm going to carry on. She also had to have her hair cut a few times during chemo.
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Lucky, I also have very fine thick hair. and a large head. I've lost a lot of hair. Its a good thing I had a lot to begin with. I had my last chemo on 1/31. I had what I called "major shedding" around day 21 after each treatment, that would slowly subside until the next 21st day. I'm expecting one more of these shedding events around 2/21. I hope it settles down after that. Fingers crossed.
I've lost hair around the nape of my neck and over my ears. I've also had some loss at the crown of my head. I just discoverd that the other day. Freaked me out, completely! Fortunately I have hair to cover it, and you can't see it very well. People who know me say they can't tell I've lost hair. Either its not that noticeable, or they are not very observant.
For those who have already gone through this, how long did it take before new hair growth started coming in? I'm concerned about the sparse area at my crown. I'd like hair to start growing there immediately!
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LeesaAnn, we are in the same town! If you ever want to meet at a Starbucks message me! My hair was thin post cold caps, and I shed for around a month pfc. The loss around my ears drove me nuts as I wear my hair up a bit for sports or working out. It came back very quickly. Now, it's a distant memory as it will be for you soon as well : )
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Oh...and maybe take a pantyhose and wrap it across the crown next time...maybe for some reason you arent getting it tight enough at the crown?
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Thanks everyone - I sure hope this subsides. No signs of growth yet with any of the other hairless parts.
LeesaAnn - you're my chemo twin - we were on the same regimen (4 x Taxotere/Cytoxan 1 every three weeks) about two weeks apart - keep me posted on your battle with the follicles. Are you taking any supplements?
Ali - my regimen was as described above to LeesaAnn - I'm afraid I dont' know what FEC is; as far as the PCC application, it was as Laura said, 50 mins prior to first chemo infusion and 4 hours after - and I was religious about that schedule. I'm not sure if FEC would dictate another regimen - Geralyn at PCC was my advisor on this - perhaps you should email her at: geralyn@talkamerica.net and ask her about this. Good luck.
Thanks all, Lucky
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geewhiz,
How long did it take for the hair to come back! I'm driving myself (and probably all of you who are kind enough to read my rantings) nuts about this! looking for reassurance wherever I can find it,
thanks,
Lucky
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Lucky I had a lot of shedding post chemo...it seemed worse at that point than during chemo. I finished in May and my shedding lasted through the summer. I did keep most of my hair. Photos are on my blog.
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LeesaAnn and Luckyjnjmom: I had TCx4 and noticed my first signs of hair regrowth around my ears only 10 days after my final chemo. I remember because it was New Year's Day 2011. So that was very encouraging, even though I also continued to lose hair a little for about two months after my last chemo. I lost some eyebrows and eyelashes a few weeks after final chemo, but not all at once, and they grew back really fast so it never was too obvious. I used a brow powder for a couple weeks to fill in thin spots. Try not to stress about the lashes and brows, because likely only you will really notice!
Lucky60 (note there are 2 Luckys on the board now!)
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PS: I think my hair started re-growing around my ears first, because that was where I lost it first, just after my 2nd chemo treatment. So if you had crown loss later in your treatment (like I did), that might take a little longer after your last chemo to grow back.
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The ear area started coming back fast...sort of 5'o clock shadowish. I never lost crown hair. The ear area fell out becuase that stayed warmish during cold cap treatment...its a common problem. I thought they had bands or something by now to fix that? Frank had me wrap a length of hose across the top of my head to secure the cap a little snugger. Perhaps that's why no hairloss at the crown.
I used to freak out every treatment...thinking that each one would be the one where the bottome would drop out and Id lose my hair. Yes, you shed like crazy and yes rolling down a car window sets off an anxiety attack...but ladies, the hair grows back
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- Regrowth- I lost the majority of my hair on the left side by my ear and a little by my right side. I am 4.5 months post pcc and the hair is coming in super fast! I think around 2.5 month post chemo, I could see a 5"o clock shadow too, maybe a little earlier. I colored my hair at the 4 month mark. I had the head higlighted and did a strand test the week before.
- I did not shed much post pcc, but my hair was fried from the chemo. I cut my hair to my colarbone ( 4 inches off) and hair was very happy. Could the heavy shedding be from damged hair? These chemicals are so strong. I made sure to eat protein at every meal, took and still taking prenatal vitamins, silica, omega 3, biotin and Vitamin D. I have never had long nails and now I do!
- The fourth month mark post chemo was a huge healing month for my mind and body too. I feel like a runner again and basically like myself.
It gets so much easier!
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Thank you all for your reply. I am glad to hear tingling hasn't resulted in loss. It is scary when it comes out, I just washed it and quite a bit of shedding but nothing major. I have thick hair. I am seeing fewer and fewer eyelashes.
Hi Ali68, I am sorry you lost some in clumps. I am taking silicea 30x and have noticed my hair is growing fast, and have had two treatments.0 -
Today I called the company for advice on cooling caps. First I was told I'm having the right amount of time for the strongest strength of chemo. Second, where a cotton Alice band over your forehead to stop cold pain above the eyes. Also got a check list on right sizes of caps to where. Also where a surgical cap on your head if you have thinning.
Was told to carry on as soon the hair will start to grow again. 70% results on keeping most of your hair with the chemo I'm on.0 -
Debbye, by the time my eye lashes were really sparse, I could see a row of new thick lashes sprouting which grew quickly.
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