Cold Caps Users Past and Present, to Save Hair
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Runner70,
About 13 days after my first treatment, I had a place on my crown that was very sore and remained quite tender for nearly a week. I thought it meant all my hair was going to fall out but it didn't :-) I think a lot of us experienced the tender scalp. I also felt weird crawling sensations across my scalp from time to time during treatment. Despite these things and all the worry it caused, although my hair thinned during treatment, I never needed to use a wig, hat, or even the Toppix powder. Hope this encourages you!
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oh thank you! This morning was a "wash hair day" and I fully expected half my hair to fall out but it didn't. I just lost the normal amount I lose combing my hair- maybe less since I'm being so careful. My scalp still feels burned but I'm starting to think that may be damaged nerves coming to the surface and has nothing to do with the follicle.
If I hadn't cold capped would I likely be seeing hair loss by now? I'm getting impatient to know if it worked or not, can you tell?
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yes! I did find a few gray hairs while cold capping! They go away! I had my 1st REAL haircut yesterday and it was nice! The hairstylist was laughing because I have different lengths of hair all over my head! a little hair is growing in like areas from where my first round of chemo in October where I lost hair that's now about 2 inches long! They really really do work! Keep it up.
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Runner70--it sounds like I am on the exact same regime as you and started the exact same day! I have itchy/tingly feeling in certain areas on my scalp too and can't decide if it is ready to go or just my imagination. I am washing tonight and I am super nervous. I have also been super careful and following everything except the no pony tail rule. It's too hard to workout and go to work looking normal but I am doing a very low and gentle pony/bun thing and have stretched washing out a lot so hoping it is fine. I'm also dying to get to day 21 to get a better sense if it is working. In the meantime, I hate to say I am totally hair obssessed!
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A suggestion for those who are afraid to wash hair too often - make sure you wash at least twice a week. If you wait too long between washes, you get a build-up of crud on your scalp that is hard to get rid of.
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Hi Cappers.
The general rule is that if you make it to day 21 with hair, the caps are working. So for those of you receiving TC every three weeks, it means you'll walk into your second infusion with a full head of hair and prove all the doubters wrong. It feels good.
I'm getting close to three years since I started chemo and my adventures with cold caps. Finishing chemo with a full head of hair was worth all the money, stress and bad hair days. I probably lost about 25% of my hair but it wasn't obvious. It was such a gift to not obsess over how long it would take my hair to grow back post chemo.
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oh ok. I though people started losing at day 14. Darn! I was all excited it was working! I read so many posts of people whose hair totally fell out at day 13 that I thought I was in the clear. More waiting....
Cassie, I'm hair obsessed too. It's the only thing in this big unexpected mess I can maybe have control over. I'm afraid I'll have a nervous breakdown if I end up going bald. I'm my oncologist's first patient to do this so everyone is curious. I'm hoping they'll be shocked to see I have all my hair at my next chemo next Thursday!
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Runner, I didn't mean to discourage you! There's no reason to think the caps aren't working. I just meant that you'll be able to relax a little and feel more confident they're working when you get to chemo #2. I know the waiting and wondering is really hard...
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no it's all good! I appreciate your information! No worries..
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Runner70 -- I was really nervous too between weeks 2 and 3. I was especially nervous b/c I didn't lose my body hair, so I didn't know when I would be in the clear to know my caps were working. But they are working! I've had 4 of 6 treatments, and I have nearly all my hair. Absolutely no one can tell! I have lost a good bit of leg hair (just stubble now), all my armpit hair, and my "lady" hair. But I still have most of the hair on my arms. Weird. My brows and eyelashes are thinning but still hanging on.
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I'm under the microscope too from Oncologist to see if they're working. 1st patient of hers too!
Just finished Taxol 5. Still have ALL of my hair- but I can go 2 days without shaving my legs now instead of 1. I'll be 1/2 way next week...so will consider a success by next week
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Runner70 -- Sounds like we have to make it to next Thursday. I'm crossing my fingers and toes for both of us (and all the current cappers!). I am also first at my center but they did get a freezer now so I'm looking forward to that for my second round!
For the unevenly wavy hair girls out there, did anyone find any products that helped hair look less crazy during the process. Dark and greasy rootsaside my hair is not exactly looking office appropriate and I'm trying not to do the pony tail as much...
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I haven't used yet, but heard Velcro rollers can give some evenness to hair. Put them in and let it air dry...then hold hair near root to carefully take out.
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Cassie, I feel the same way about day 21. But I realized today I haven't shaved under my arms in 3 days and they are totally smooth. And I have less nose hair of all things! So I do think that's a good sign. My legs are as stubbly as ever though.
So I haven't been putting my hair in a pony tail at all. When I run (if that's what I can still call it) I pull it back in a soft fabric headband and just let it hang. I don't really have issues with my hair at work because I work in an operating room and we have to keep our hair covered in a bouffant cap. That makes it easy!
I was at my surgery follow up today and mid way through talking to me my surgeon said," wait- you still have hair!". Then he remembered I was doing TC and said it takes longer to lose. Total buzz kill. Lol! I told him I was cold capping and I think I can already tell it's working.
I sure see a lot of posts of people dramatically losing hair at 13 days on TC. We are past that.I hope we both have lots of hair on Thursday!
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Wishing everyone a happy and safe Easter from all the way from the land down under😘
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Hi Aussie, Hope everyone had a Happy Easter!🐣
Finished #5 Taxol/Herceptin last Thursday, still no issues yet! Like Runner 70, I have noticed my underarm hair really isn't growing anymore, but still have stuble on my legs :-(
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QUESTION for ALL cold cap users..we all hear of the success stories, have there been any users that did not save their hair?? Did anyone lose their hair even though they used penguin cold caps
I'm on first treatment day 12 so I have a few days to see how treatment one hair survived
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phalia, there have been a few capers who gave up, but often it was due to the number of treatments and type of chemo. I had very good success with cold capping on 4 rounds of TC. My husband was my capper and is a total perfectionist, so I think that helped. However I did lose about 15-20%of my hair, mostly around my ear and nape of my neck. Strangely, my hair is growing in very thick and strong where it fell out. I've had thinning hair for years due to hypothyroidism, I now I have more hair than I've had in years!
Hang in there! Days 18 -28 are tough, but the shedding WILL slow down!
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I told my husband that if I only lose some of hair that it would be around my temples and nape of neck. Those areas did not get cold at all!! Like nothing even with those extra bands! Actually my whole head did not feel cold at all during treatment. I didn't get that cold headache or ice cream eye sensation, which worried me a lot. And we know the temp was right... I guess we will see
Congrats on thicker hair!!!
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phallia, I didn't think my hats felt very cold either but we measured the temp and they were. I also didn't get a headache or anything. I really didn't think it was all that bad, I just don't like the chin strap and the ear covers make it hard to hear. I had icicles in my hair too.
I've gotten to 18 days and still haven't lost any hair on my head. I guess some shedding is coming but I've already lost all my hair everywhere else. I get to put away my razor! Half my lashes and brows are already gone, too. I thought that came later but not with me. I bet I'd be bald my now had I not done cold caps.
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Yes, we have had some who have not had success with saving their hair with cold caps. It tends to be those who are on the AC regimen, but occasionally it has happened on other regimens.
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Hi- I will be starting chemo 4/25 for 4 treatments. I plan on using a cold cap. Which brand would you recommend? I have found info on 2 (penguin and chemo cold caps). My oncologist said it was fine, but has never used them before. Any advice?
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Hi Sheri-CT: I'm new to this myself but I hear that the penguins seem to have more users at least on this message board. That's why I went with them.
I have only done one round so far and did it with the dry ice but was able to convince my infusion center to accept a freezer. For those of you that did the freezer, did you keep the caps in the boxes or use the extra large storage zip locks?? I'm worried about them being cold enough Thursday. I am also considering bringing just one cooler with 4 so I can leave the center for the last couple hours. Haas anyone done that combo method?? Any advice would be great! I am right now the only one using the freezer at my center.
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Cassie - the caps at my facility were kept in the boxes, to protect them. Make sure they are in the freezer at least two days ahead of time so they are cold enough. (At my facility, two sets of caps were just kept in the freezer all the time.) Open and close the freezer door as quickly as possible when getting out a new cap. I stayed at the facility to finish capping, but I know some people do leave and finish capping on the way home/at home. Do you have enough caps? We used at least 14 each time.
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For newbies who want a summary review of cold caps, I have bumped the newbie thread (but please keep asking questions here, not on that thread).
https://community.breastcancer.org/forum/6/topics/...
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I haven't posted since I finished my chemo back in late October. I used Penguin Cold Caps but lost probably about 70-80% of my hair (getting lice didn't help). But my hair is growing back in with the chemo curls and now you can't tell (other than I have short hair).
Since it's tax time and we're adding up all of the medical expenses, we have a question. Has anybody been able to deduct the costs of renting cold caps (and also the dry ice) as a medical expense?
Good luck to all of you who are going through chemo. You will get through it and it will be behind you at some point. I found radiation to be a lot easier (for one thing, it's a lot faster and you don't need cold caps)!
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dancetrancer- thank you for bumping the thread. I have several questions-
-how large should my coolers be?
- I'll need 100 pounds of dry ice? That seems like a lot. If I store the caps in my freezer, do I transfer them to the cooler the day of treatment? Will I keep refreezing the caps?
- can I swim in a pool or will the chemicals hurt my hair?
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Sheri - you are welcome! It has been 4 years since I did chemo - so my memory is fuzzy on the details, but I think:
1) They were Igloo "cube" coolers on wheels (makes moving them around MUCH easier). Two of them. I think either 60 or 64 quart? I can go look tomorrow if no one else chimes in with the details. I found mine at Walmart.
2) Yes you will need 100# of dry ice, if you are getting the ice the day before - to be safe. I got 80# the first round around 4:30 p.m. the day before chemo. My chemo was delayed starting to around 11 a.m. the next day and I ended up capping probably til 7 or 8 p.m. b/c my center was soooo slow getting my infusions done. The first round my caps weren't quite cold enough by the last round or two of capping. I did ok, but it made me nervous, so I got 100# from there on. If your infusion center runs on time and/or you are getting ice the same day as your infusion, 80# should work.
3) I think I remember transferring my caps from my freezer into the dry ice coolers 3 hours before infusion time to assure they would be cold enough...others...please chime in....my memory is getting fuzzy on this!
4) Yes, you will need to keep recycling the caps into the coolers as the day progresses. Place a piece of tape on each box and number it. Put the most recently used ones on the bottom and cycle the newer ones to the top as you progress. Then by the time you get back to cap 1 being on top it will be cold enough again.
5) Pool question - we had one member who swam in a pool daily without ill effects. She rinsed her hair with cool water each time, I believe. She capped before me, so she may not be on the thread any more. I think her name was Susan? Ugggh. A mind is a terrible thing to waste...I blame chemo. LOL
Astro:
Tax question - I would think you could justify it as a medical expense, but I'm certainly no expert on that, lol! You need to check with an accountant as taxes certainly are complicated and tricky!!! You need to make sure it would be justifiable if you were audited.
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