Cold Caps Users Past and Present, to Save Hair
Comments
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Hi Sayuri, Above one of the ears is the classic place for Penguin Cold Caps users to lose some hair. Mine thinned greatly there -- never totally bald, but definitely the one noticeable place. I came to see it as a badge of honor, proof that the caps were working. Because of the way I wear my hair (down), it wasn't noticeable unless I showed it. Of course, I showed it often, to show my progress!! It has almost completely filled in now -- it regrew throughout chemo, but then comes roaring back almost immediately! Keep using those straps to pull the cap tight to the nape and the hairline. As you "knead" the cap while wearing it, you can also spend extra time pressing the cap to that spot.
My shedding was heavy at around the same point in chemo as you, and it did continue throughout chemo (and even after chemo) but it did not come out in clumps. Don't worry! I know it's hard, I never totally believed I wouldn't lose my hair -- sometimes still wonder if it will all fall out, believe it or not! -- though you can't tell at all that I lost any. Try not to worry! As you continue through chemo you may be able to compare your hair experience to other women who are going through chemo without Penguin Cold Caps. I visited my MedOnc yesterday -- my first three-month followup!!! -- and the nurses still remembered me as the Penguin Lady :-)
WhichWay2ru: I don't know what the Elasto Gel Caps protocol is for hair washing; for Penguin Cold Caps it is only once/week. I too was a daily hair washer, but my hair actually got used to the once/week washing (and daily cold rinsing) after the second chemo. I definitely lost lots of hair during hair washing and hair combs -- the physical manipulation of the hair in any manner really pulls on the roots and can pull your roots out -- so I minimized those activities in order to save my hair as much as possible. I'd definitely suggest NOT pulling on your hair! :-) It's trying desperately to hang on!! baby it!!! It may look stringy for a while, but it will be there! Keep on keeping positive!
Susan
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sebm9~
I laughed after reading your post as I had my last chemo in March and I STILL wake up and look at my pillow to see if all my hair has fallen out...
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Peggy
You are awesome! Thank you for sharing all that. My hair feels so icky too! 6 days out from first chemo and just slowly getting better from bloating and distention, not to mention, pms-ing at the same time which did not help. I thought the first day was sooo long! 10 hrs of caps for me! 5 more times to go seems so far away but hopefully we will all keep our hair. My hair is thin also so I am in fear that I will end up losing alot. The waiting game is so hard!
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Hi bridetobe,
Thanks for the enouragement! It made me feel so much better that I'm not the only one balding in this area! I was worried that the caps aren't working for me, but I guess it's the exact opposite, and it is a sign that they're working! It's frightening to think that without the caps, all my head will look like this!
Hi Whichway2run,
I'll try folding my ears next time! Thanks for the advice!!!
Hi Susan,
Thanks so much! I feel so relieved to hear that the hair even comes back during chemo! I'll show my bald spot around to show my progress too lol. it kinda looks like the 80's look, remember people with 2 blocks hairstyle who shaved off the bottom half of their head? i guess it's not that bad after all...
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Susan: You rinsed your hair out every day with cold water and it was still ok?
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I don't know how all of you did the caps! I only have one session out of 6 under my belt and am dreading the next. Not only were the caps unbearably cold the first few minutes, but by the end of the day I was feeling sick. I was told Chemo would not make me feel sick that quickly, so it has to be the caps. I know I want to do this every time I look at my hair. I also want to show my Oncologist that it can work. He's a skeptic, but said he's watching me.
Let me know any tricks you did to make it bearable!
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michcon~
I used to feel that I could not stand the caps. I was only thinking of them during my whole treatment. My mom got me some relaxation cds to listen to and some silly movies (Airplane etc.) I had to REALLY focus on these things and not the fact that my head was so cold. Hot soup and a Hot water bottle really helped me also.
Hugs to you...
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Sayuri - I also had lots of shredding days 17 - 24. I have thick hair and it was really coming out. I have no bald spots around my ears and I think it is because my husband had those straps pulled tight around the nape of my neck up to the forehead. In fact, the hair around the nape of the neck is the thickest -- which was not true of earlier PCC users. My thinnest spot is back top of head -- in the general area where men's hair thins first. But no one can believe I just did chemo.
Michon - I found an alleve/ibuprofen to be a complete pain reliever when wearing the caps. I would take it every 4 - 6 hours and was amazed at how well it worked. Moleskin PADs and panty liners provided adequate skin protection. I used an electric blanket to minimize the chill, and sometimes I was too hot. The cap process does get tiring. The caps are a little heavier, and the feel heavier as the day goes on. And doing the caps for the second session was so much easier than the first.
Colleen
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My penquins caps have begun their journey back to Michigan via UPS Ground Transport! Have a great trip
!As much as I loved the little things for saving my hair, I am so happy to be done with chemo & caps and that I have my freezer space back. Compared to many woman, I had it easy: only 4 treatments. But everyone just hang in there. These caps work and compared to what I am reading on other threads about the downside of going bald, head rashes, hot wigs, etc., I have concluded that you just pick the inconvenience that you are willing to deal with -- ain't none of this easy.
Colleen Keough
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Kalaoamom- I have thin, straight hair, too. I did TC x 4 and my hair did really well. Lots of all over shedding, but no bald spots and you could not tell by looking at me that I had shed a lot. I am 2 months post chemo and pretty much look like my old self, excpet I have not colored my hair yet. I rinsed my hair in the shower everyday but only washed it 2x per week. I also used a spray on conditioner (Ojan revitalizing mist) everyday and I blow dried my hair with a big round brush on the "cool" setting every work day. I know you are not supposed to do that, but I couldn't stand the big limp mess of hair, so I risked it and it worked out fine for me. Just my 2 cents.
Emster- glad to hear from you! Hope you are doing well! I rinsed my hair in the shower everyday, sometimes 2x a day if I worked out.
Michcon- did you eat during your treatment? I did not really eat during treatment 1 and felt terrible. I made sure to bring or get food for the rest of my treatments and that helped a lot. the caps really do get easier as you go on in treatments. My first day was the longest by far, but after that we had it down and we got started right away so we could wrap things up quickly. Plus, I think after the first treatmentyou know what to expect, so it gets easier. And you are seeing or hearing about other people who started chemo when you did who have lost thier hair and sufddenly, its not that bad to go through the cap hassle every three weeks! At least, that is how I felt. Hope it gets easier for you!
Good luck ladies!
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Hi ladies,
I'm trying to help out another woman who is starting chemo at my treatment center in Montreal (Canada). She had been asking around for information about the cold caps and the nurses waited until yesterday to tell her about me (apparently they tried to convince her that it was too much work and not worth the money - clearly they haven't been on this forum). Anyways, she is scheduled to start chemo on Monday and my caps have already been sent out to someone else. Does anyone know of caps available in the northern New England area or northern NY?
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Michcon,
One thing I did to prevent nausea or dizziness during chemo was that I used seasickness patches people take before going on boats. Wore them for my 6 chemo treatments and I don't know if they worked or not, but I was never nauseous or dizzy during chemo. You can find them OTC at pretty much any drugstore.
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Michcon,
One thing I did to prevent nausea or dizziness during chemo was that I used seasickness patches people take before going on boats. Wore them for my 6 chemo treatments and I don't know if they worked or not, but I was never nauseous or dizzy during chemo. You can find them OTC at pretty much any drugstore.
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Hi Emster,
Yes, I rinsed every day -- usually twice, in fact, because I am a daily swimmer and kept up my swimming throughout chemo. I'd rinse my hair in cold water before putting the swim cap on, have my swim, and rinse my hair again after the swim. Once a week I shampooed gently (cold) and I did use conditioner because without it I'd surely have pulled my hair out just trying to untangle! I'm convinced that the added cold water, plus the hour in the cold water pool, provided an additional daily chill and helped me keep even more hair. I only used a wide-tooth pick-type comb to come out my hair (still doing that too!).
On my shampoo day and the day after, I'd often not swim and if I had anything social planned, like dinner or lunch with friends, I'd try to time it so I was at my most chemo-beautiful :-)
michcon: I know how you feel. The caps were definitely a lot of work and I had to keep myself psyched leading up to chemo day; having spoken to other chemo friends (non PCC users), I now see that they also had to get psyched up. I stayed really positive about it, esp. as I was the first person at my cancer center to use PCCs and I wanted to prove to them, and myself, that they worked. I'm not a vain person at all, but for much of my life my hair was one of the few things about myself that I liked, and at times I was almost more motivated in saving my hair than in beating cancer! Well, not quite, but that's how it felt. I almost didn't go through chemo because I so did not want to lose my hair. I'm so glad I accidentally stumbled across the PCC info,the night I'd decided I had to go through chemo and not be afraid of being bald short-term or even forever (in the case of permanent hair loss with TC). You could try taking a pain killer or even an Atavan if that's in your RX arsenal. I found that eating helped, and anything I could do to distract myself (like send emails on my laptop).
My premeds included Emend, so I did not have nausea from chemo, but I did get slightly dizzy ( it's a side effect of chemo, too).
Hang in there! You are not alone and the results are worth it!! Hopefully some of these great suggestions from folks will help you. Your nurses might also have suggestions.
Best,
Susan
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i wanted to know how long after the last chemo treatment does the hair stop falling out? I am on TC and having the last of four treatments next Tuesday.
Elizabeth
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Hi EAW1,
My last of four TC was June 21; my hair stopped shedding about 2-3 weeks ago, so really continued a good 6 weeks afterwards. At times I was a little panicked it was going to fall out after all! It didn't.
I have to remind myself that I have always been a heavy shedder and my current rate is my "normal"! I was surprised at how long it continued to shed, so I've continued with the cold water/infrequent washing hair care protocol.
I take my first Tamoxifen tonight (a half tablet for the first week).
Good luck!
Susan
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Hi ladies,
I wanted to let you know about a hair product that I tried and like. I am now 6 months past chemo so I am trying things, but only natural ones. This is called "In Love Conditioning Hair Plumper." You put a couple of drops on your scalp after your shower and it seems to give my hair more body and lift. The products are all natural, the owner sent me a very nice email and her website is inlovewithbodycare.com
Just an FYI...
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Ang7: when did you start using warmer water, and when did/have you resumed regular shampooing? I'm 3 months post-chemo and shedding has just slowed (though all other body hair is roaring back). The post-chemo hair care protocol is a little fuzzy for me.
Thanks! And thanks for the tip on the hair plumper! I don't usually use any styling products but am seeking recommendations for something light which I can use to help prevent the flyaway look. I have long hair but the chemo-shed hairs are growing in and are about 2" long and stick up all over my scalp. I figure a little styling spritz of some sort will keep them laying flat but I'm a novice when it comes to styling products. (And I'm not washing every day so I don't want to end up with a thick coat of stuff on my hair every few days.) Thanks to anyone for any advice!
Susan
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Hey sebm9~
I was a chicken about it and I waited till 4 months past chemo to use warmer water and to wash my hair more often. I went about it gradually until I reached the stage I am at now, washing it every other day.
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hi- have any of you out there had your hair examined either before or after chemo by the Miyohara Trichology clinic listed on the www.msc-worldwide.com website? And have you used any of the products they offer post chemo? if so, what are your thoughts?
E
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Hi everyone! It's been a while since I've checked in. I'm now 9 weeks PFC with 2 more weeks of radiation to go. I'm actually doing well and I think my hair is finallly stabilizing and feeling pretty soft. My eyebrows are totally back but now it seems my eyelashes are beginning to thin.
I've been on a desparate search for something to cover the grays but I think I've come to the conclusion that I still need to wait a bit because nothing is really safe and just keep using the root touch up stuff (that comes off in the shower). It's kind of ridiculous already because of the large amount of gray hair I have but I guess I'll be putting up with that for at least a couple more months.
susan - you always crack me up - your most chemo beautiful. When I first started this process I figured I would look okay the day I washed my hair and then really bad for the next few days but it actually didn't quite turn out like that. Due to the drying effect of chemo my hair actually looked better the next day. The first day it was kinds of fly away. Congrats on finishing rads. I love that you keep paving the way for me as tamox is next on my list. I see the onc next Tuesday. Perhaps I will have get Rx then.
makingway - I hope you're feeling good this weekend after the chemo.
cmksocal - wow, you're done!!! That's great. The time really does seem to fly by quickly. Hopefully you are feeling that too and that you are doing well.
EAW1 - good luck with your last treatment. YAY!! I haven't used the services of Miyohara. Maybe now would be a good time for me to check it out.
chey, michon, becka, emster, peggy, sayuri, shawnlo and anyone else out there using the caps - I'm thinking of you and hoping for the best - for both SEs and hair!
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Drim: You are awesome! I am glad that all is going well with you. Can't wait to be where you are at!
Thank you for all of the very encouraging words! You have a kind spirit
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hi girls, well i have lost a ton of hair, but my head is still covered, im gonna say about 65 % at least, i do wear a wig to work, but can go out in a very thin ponytail without a hat, it has shed very even all over but i must keep in mind i was on the AC, hard stuff! and now im on my 4 Taxol out of 12, some girls have said that their hair started growing back on Taxol so im hoping that is true. I do attribute some of this hair loss to my stress, Emotionally i did not deal well at all with the cancer and we all know stress makes your hair fall out, but my head is still covered just very very thin, it is very noticeable by everyone but i do still have hair
i hope it makes it thru all 16 treatments! wow,lol thats a lot of cap wearing for 8 hours each time,lol i wish the best of luck to all of our new girls and to tell you, DONT STRESS,love to all
chey
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Drim - nice to hear from you. Yes it is nice to be done with chemo and I'm ready for "stage 2". My lumpectomy is 9/28. You know, since I started with chemo, I haven't really been thinking about "breast" cancer. I have been aware that I have "cancer" but was fixated on doing the PCC and managing chemo. The surgery (even if is it just a lumpectomy) is going to be a major mental shift for me.
Colleen
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Chey~
Your posts show that you have a strong spirit...
Know that all the Cold Cap girls are there for you!
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Ang7, thank you 0
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Hi Everyone,
I had my second of four AC Friday, and it has knocked me for a loop. The nausea is huge and this time I am very tired. So, far none of the nausea medicines are helping. I take Emend for three days, along with Ondansetron & .5mg Lorezapam - no luck, then with 1mg Lorezapam, still no luck. Then we tried Dexamethasone & 1mg Lorezapam, no luck. Now it is Kytril twice a day and 1mg of Lorezapam....slight relief, but only for about three hours. I can handle the exhaustion, but the nausea is much harder than I expected. I feel like my stomach is hot all the time, as well as the rest of my body, but no fevers.
I am using the Elasto-Gel Caps, and yesterday, I definitely noticed more shedding. It is very strange to see long hairs come out of my head ten and 20 at a time. I hope I don't keep shedding like this....I don't know if I will have any hair left after a while. LOLI trimmed off about 4-5 inches because it looked so dead, so it looks a little better. All my daughters are claiming their hair is falling out like crazy too!! They make me laugh, and I tell them it is just sympathetic hair loss.Chey, it seems we are on the same protocol, and I, too have a lot of trouble dealing with the emotional aspects of the cancer....especially the chemo. I think the surgery will not be so big an issue, but, I do have trouble with the chemo and the radiation treatments.
I am so glad some of you are finishing, I pray for all of you each night, and my thoughts are with you all during the day. It is amazing how many of us are fighting this battle. I wanted to stop in, it is refreshing to hear from you all here, and makes getting through this less difficult, on days like this.
Anyone have any ideas on nausea? I had nausea for 12 days after the first treatment, and am hoping we find something that stops it soon. Thanks,
....and hugs and love!
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Hi Peggy! I'm so sorry to hear about the nausea - so unfair! I don't have any advice other than for you to ask the fine ladies of the August chemo group (or June or July). Wishing you the best!! You daughters are so cute - sympathy shedding. Yes, the AC seems to be really tough on the hair. I hope it makes it through but more importantly I hope you find a solution to you nausea!
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Peggy, I'm so sorry to hear about your intense nausea! And sorry you aren't finding relief from the meds. My nurses advised eating very small amounts, bland foods (rice, bananas, apple juice, oatmeal, eggs, crackers, toast), lots of fluids (water/apple or grape juice/broth). Whatever you find that works for you, go with that! It is temporary and as you detox and as your stomach recovers, you will feel relief.
Thinking of you!!
Susan
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whichway2run, im so sorry your not feeling good, i took compazine for about 3 days after and it really helped me, you only have 2 more to go, my third week was the worst, fatigue and emotions.. I promise you the Taxol is so much easier, it goes by fast also, i have 8 left. dont stress it will help with your hair... you will get thru it!!
thinking of you
Chey
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