Cold Caps Users Past and Present, to Save Hair
Comments
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Soxfan75
I was using Penguin and they called for 45 lbs of dry ice. Ours came in blocks about 2 inches thick and 1.5 blocks covered one layer of the bottom of our cooler. You know the more surface area of the dry ice, the faster it will sublimate. There were 4 cold caps and 4 long strips that went around the back of my head (collar area). I wish I had asked for a discount, but the worker/owner? knew it was for cancer, and didn't offer. I think I could have gotten it cheaper from Shoppers Food Warehouse, but they probably would not have been consistent about supplying 45 lbs of dry ice every two weeks.
I really have no interest in dry ice anymore after 8 chemos and one aborted chemo (after 2 hours of cold capping -- before the chemo drugs went in, doctor determined I was too sick).
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soxfan - I just had my first treatment/capping on Monday and was equally grossed out by my hair. I waited until I was supposed to though and finally washed it yesterday. I had read all of the tips from everyone on here and decided to try to wash mine in the shower and just deal with the cold water. It wasn't so bad but i am thinking the water pressure in my shower was a little too strong? It took all day for my hair to dry so i was glad i started early. I am hoping I get more creative with my styling efforts or find a few cute headbands or something. Right now I feel like the capping process is such a huge effort that i dont want to mess it up but I look like a drowned rat.
Let us know what you decided to do...
THanks for the support - thankful for you ALL 💕
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Soxfan, if you can, have them do the herceptin and perjeta after your taxotere and carboplatin. That way it can be part of your post-capping time and shorten your day overall.
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hi soxfan, sorry u have to be on these boards. I used penguin and I'm 4weeks PFC. Penguin states not to wash your hair until the 3rd day after chemo. And I had to get 80lbs of dry ice in 5 or 10lb slabs. But the dry ice place gave me a deal $40 for 80lbs. Not bad. Good luck with your treatments
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soxfan- you need to be buying about twice the amount you currently are, especially if you are getting all pellet since it has greater surface area available to sublimate. I did 40 pounds of slab and 40 of pellets.
Yes that damn chin strap was the worst part for me too
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what's the name of that shampoo some of you guys use for hair loss? Does it work? I think it starts with an N. I started methotrexate shots yesterday and I really don't want my hair to stop growing or fall out after all the work I did last year saving it from chemo
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Runner: I think the shampoo you're referring to is Nioxin? I thought about trying it but didn't. Sorry to hear about the need for methotrexate. I hope you're not in a lot of pain and that life is good for you. Wishing you the best.
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thank you, Willa. Yeah I can't seem to get this weird arthritis under control so my doctor added methotrexate shots. But from what my oncologist said, it's low dose not a chemo dose so side effects should be minimal. Plus I take folic acid. I'm going on 9 months since my last chemo when all this inflammation started. I'm on humira shots and everything and I still have trouble every morning getting out of bed. I quit running 3 weeks ago and dropped out of half marathon training. It all just hurts me feet too much. I thought cancer treatment was bad but this bout with non stop inflammation has been terrible and disheartening. I should be celebrating my survival and moving onand instead I'm miserable.
Lately I've been really stressed at where my hair regrowth should be, with my last chemo being May 19th. I worry humira and methotrexate are going to thin my hair. Oh yeah, and tamoxifen. I measured it tonight and it's 5 inches long. That seems about right. It's just seeing it everyday seems like it's stopped growing. I had a lot fall out last month for some unknown reason. I finally attributed it to tapering off steroids but I'm just extra sensitive about any hair that falls out now. Where is everyone else on their growth timeline? Has anyone kept a photo diary? I looked at mine tonight and was shocked how bald I was in July in places. It didn't bother me at the time but I sure was relieved when it started growing back!
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I agree with everyone, we boosted our dry ice to between 60-80 lbs. instead of the 45 Penguin recommended.
Runner--I'm reading a lot of bone/joint pain associated with tamoxifen on that forum. Do you think that may be the underlying cause of your pain? Sounds like it's interfering with your quality of your life which is my biggest fear with that drug! Nioxin is the shampoo you are thinking of but I don't know what is in it that stimulates growth. I had used Rogain a couple years ago when I had some hair thinning at my temple with success. Scared to use it because of the chemicals but have read that peppermint and rosemary essential oils can stimulate hair follicles. I'm currently using castor oil in the morning & night on my brows and lashes. Been 2 weeks and I can't believe the improvement! 2 weeks ago there was nothing and this week I'm seeing patches of brow coming in, I really thought I hadn't washed off the brow liner in a spot and realized there's bunch of stubble there. And I can actually see the lashes coming in with my naked eye. Is it the castor oil or do they grow that fast? I don't care. I'm going to use it until they are all in! Unfortunately I tried it on my hairline one morning and it just gave me greasy hair. So I'm going to look in to the rosemary/peppermint thing to see if it's thinner consistency with less residu. Even if I only do it at night.
Hanging in there--what do you put in the water you swish in your mouth? You left that part out.
Soxfan--good luck with everything, It's grueling but SO worth it!! It's a pain in the ass working so hard for your hair and there's more work post chemo babying it and seeing grays or covering thinning spots, but you HAVE hair!! You aren't starting form ground 0. You look normal to everyone who doesn't know. It gives you some dignity and normalcy. So hang in there! It's a long day!
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Pamela23
OK to keep your taste:
swish 1 tsp of baking soda in a glass of water, several times a day. And chew suger-free gum (like cinnamon or peppermint) throughout the day. I did this for a little while and saw an improvement, but so far I'm too lazy to keep it up.
The gum is to keep your taste buds working. I was doing that, but ran out of gum too. It is hard to be motivated on chemo (and now 14 days post chemo
amw5 swears by this and never lost her taste.
Post chemo I am losing my hair at an alarming rate. Does anyone have experience with this? I now have 3 chemo caps which I wear (with my remaining hair hanging down) out of the house. I have asked for a wig referral, so I can get a wig if this keeps up. I think I'm down to 25% of my original hair. More comes out each day. I don't know when it will end. I am 14 days post chemo. So tomorrow would have been a chemo day, but I'm done and waiting for surgery.
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Runner: So sorry to hear about your pain level and that you have had to stop doing something you love, for right now. That must be devastating. Hopefully the methotrexate jump starts the recovery. Are you at all open to acupuncture? I've done a lot of acupuncture in the past and it's helped with a number of different issues. I've been having terrible pain in my hips since starting Tamox and decided to go back to acupuncture last week. I'll let you know how it goes. I wish I could help you. After a pose in yoga last week I could not get up off the floor. Just lay there and cried. It's hard to go from being in great shape to feeling like you're 80. I still feel hopeful though that there are both traditional and non-traditional treatments that can help achieve health and balance again. Good luck with your shots. Please let us know how you're feeling.
On the hair growth, I haven't kept a photo diary. But I do know that my hair has only grown about 3 inches in the 8 months since I started chemo. My onc mentioned she wanted me to wait longer PFC to color because she thinks (anecdotally) coloring too soon after chemo slows down hair growth. I think there might be something to it because since I've colored (twice now) I've had less 1/4" growth per month where normally I would have 1/2-3/4". Not sure if you color. I'm still doing Herceptin (and of course Tamox) so maybe it's a combo of many things - drugs, chemo, stress, steroids, etc. I agree 5 inches of new growth for you seems on track, actually, if you assume it grows about 1/2" per month. Maybe you are really okay??
Pamela: Thanks for sharing about the castor oil. While my brows and lashes are totally back they are not what they used to be. I'm going to give this a try. I know a lot of eyebrow gurus recommend castor oil but I just kind of brushed it off before.
Good thoughts your way, Hanging in . I'm sorry about the shedding. That's hard. I think there is so much variability. Usually though it just stops suddenly. Hopefully that will be the case for you.
Soxfan - best of luck to you!
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Hello Hair Warriors!
I am 8 weeks PFC. As a reminder, I did AC&T. I never had any bald spots, just lots of thinning. I estimate I lost 75% of my hair. I had very blonde hair to my shoulders. I cut it 1 1/2 inches once during chemo, after my 2nd Taxol. had 2 more Taxols left and it was during this time I lost 80% of the total 75% loss. It was not due to the cut, just cumulative of the chemo. I cut my hair again 4 weeks PFC and took off another 1 1/2 inches.. it helped a lot but still had "stoner hair" lol or scraggly troll hair.. so again last week almost 8 weeks PFC I cut it again very short. I cut off all the blonde, so now I have my natural dark dirty blonde hair. My hairdresser said I had 2-3 inches of regrowth, coming in all over my head. My hair grew a lot during chemo, the length now goes from my part to the bottom of my ear lobe, so it covers my ears, totally my natural color, so that's how much it grew during chemo. I don't know how or when the body or bounce will return, maybe an alumni can comment?
I still wash 2xs a week with cold water, a natural hair growth Argan Oil shampoo and use Acure conditioner. I comb only and blow dry on a cool setting with a round brush gently for minimal styling. The blow drying is a Penguin no-no but I do, what I do, to get by...
I have my lashes back and never lost all my eyebrows. The eyebrows left were light so I painted some in. Now my brows are back but it's dark stubble mixed with the blonde hair so more natural looking.. I had mighty brows before and it looks like they will be mighty brows again.. at least this go around.. 🙀
I used Latisse starting after last chemo and also started taking Viviscal (hair growth supplement)...
Right now I don't "like" my hair, the length, the color or the texture but I think I "like" it way better then if I was bald. The hair cuts helped my sanity a lot. The dry troll hair hanging down so thin drove me crazy. Now at least I have a style. I never had to wear a wig and I was able to keep my privacy.
The support from this group day to day helped me so much to get through this, thank you everyone. I always wanted hear from past cappers so I knew what to expect PFC. I hope this helps someone who is worrying or wondering, especially those going through AC&T.0 -
Do you have to buy these cold caps, mitts and socks ? I am new to this and have not heard of it . Why the mitts and socks ?
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Luvmyys,
Just looking into Viviscal, I had never heard of it. Did you just get the pills or did you get the shampoo/ conditioner. It is not clear to me why I need the shampoo/ conditioner. The ingredients of those products are not listed, so not sure if they are paraben free and sulfate free.
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viviscal- I went to buy it on Amazon. I read product reviews and there may be a few counterfeit products out there in Amazon land. Try to purchase it from a know retailer. Amazon has fooled me a few times.
Walmart sells it too.
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luvmys, thanks for your hair update. Im totally with you. I have exactly troll hair. You took the words out of my mouth. I'm on day 4 of tamoxifen and I just pray that it doesn't effect my new hair growth. Im taking back biotin still and silica. I'm scared I will look like this forever
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Hangin - I bought Viviscal through Amazon. Like Elastogirl says I read the reviews and did see some scams out there..I was desperate and foolish and just bought it, but she's right, be cautious. I only bought the pills, I noticed growth right away, but that could have been just normal and not related but I am telling myself they helped. 😉
Hopfull2 - Have you noticed anything yet on Tamo yet? I wonder if we have to get through all the new growth before the body and bounce returns. I just don't see how that's going to happen with what's on my head now. Ugh!0 -
Welcome to the save the hair group!! Check out Rapunzel project for a list of all the cold cap companies in the U.S. and start your research there. In the U.S. cold capping is private pay but there are some that offer financial assistance if you qualify so check that out as well.
I am using Penguin Cold Caps, but others are using different ones and having success. The mitts and socks are to ward of neuropathy that can develop from some chemo protocols. Post your statistics as well so others can see what chemo you are having, that will help in replies from all of us. You do this in settings.
Hope this helps you get started!
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First off…all of you ladies are simply amazing. Your strength and support is encouraging.
Bruinvol10 – I finally washed my hair yesterday and it felt so good. I did it in the shower and just dealt with the cool water. I may change out my shower head for one that converts to a hand held. I'm thinking that might make it a little easier. Like you, I have no idea how to style it, but I'm sure we'll figure it out. I told everyone I know that if they see me in the next few months with gorgeous hair, then they can assume it's probably a wig. LOL
PatinMN – I asked them if they could switch the order of the drugs so I get the Taxotere and Carboplatin first, and they said that they can't because they keep it in the same order as the study. Perjeta used in adjuvant therapy is new from what I understand.
Since Arctic recommends no shampooing 3 days before and 3 days after your chemo infusion, has anyone tried using a dry shampoo to get them by? I bought an organic one by Acure. Anyone heard if this is a no-no?
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Pamela- I've had no side effects from tamoxifen except mild hot flashes and some sweating at night but I'm not drenched like during chemo. It's not causing my tendon problems because it started toward the end of chemo. I wish I could blame it on that and know it will go away. It actually helped my cholesterol problems get better. I guess that's a positive.
Willa- sorry you're having so much trouble with it. It's weird how one person gets joint pain from tamoxifen others do. I would think yoga would be really good for it. Hopefully in time it will get better. It's frustrating to have all this hanging over our heads after treatment.
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Runner--glad to hear you are having an easy time with tamoxifen. I'm really not looking forward to it. I feel like I'm done wondering how my body is going to react to another thing that's foreign to it. I feel like after the past couple years of having trouble staying asleep all night and then the night sweats of chemo, I am finally getting some sleep. Don't feel like more night sweats.
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Hii all,
So I haven't been posting...I got pretty tired the two last weeks. Had my last Dose Dense Taxol March 23 yay! Also met with my surgeon ten days ago. Surgery now scheduled for April 20. Brief vacation from treatment is nice!
All is well after my last chemo. I'm just exhausted and have a bit of overall joint pain and numbness in my fingers and toes. Can't taste, eyes blurry. Better than the last time,,,no neulasta.
I tried to stop caring about my hair! The last big shed started about three weeks ago and lasted about 21\2 weeks! constant huge losses. I have lost so much now I thought it was a total failure. My hair is super thin on the crown you can see my scalp in many many places especially when I don't take time to arrange my 'comb over areas'. Anyhow for a while I thought it was time to give up. Yesterday I messed around with my toppik. I have to say the stuff is a miracle. I slept on it and woke up to a head of thin hair but without the visible all over thin bald showing...so, it wasn't as much of a bummer to look myself in the mirror!. I stay at home a lot so much of the time I just leave my hair alone...now I find I need to fix it up for me ! or I will fret over the losses every time I go to the bathroom. I should just put a towel over the mirror! Anyhow with the toppik I have a more positive outlook on the result.
Anyhow just writing to give another thumbs up to the toppik. For a while I thought the toppik was clumping in my hair and making snags of hair to fall out. Right now my hair has stopped shedding, whew! I can't really say what it was that caused the big shed. Accumulation of chemo most likely! AC n T is a crap shoot. I read this quote ' with AC T you may have a 50 percent chance of saving 50 percent of your hair.' I think I have about 20 percent left so that's less than optimal.
I would do the caps again though. I am greatful for the hair I have left even though it is not a pretty site. I felt so much more normal for the last four months. Never got a wig. Id not likely tolerate wearing one I'm a fidgety itchy sort. Can't even wear a ring.
Before and after Toppik application.
Hugs all
E
PS I started buying 'mommy coffee' on Amazon. It's low acid, organic, and you can buy 1/2 or 1/4 caffeine. I like it. I have a house guest that is a coffee nut, ,he doesn't like it. I love it but My taste buds are all taxol...I like the low acid thing anyhow. Trying to quit coffee! it's not working.
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Hi Everyone,
I'm new to this community. I've had two sessions of chemo, AC, using the Penguin cold caps. I'll have two more with AC followed by 4 sessions of Taxol. I'm finding that the cold capping is significantly harder to endure than the chemo. The cold doesn't bother me. The weight and pressure of the helmet are triggering intense migraines and dizziness. During my first infusion, my doctor gave me Atavan, but I hated feeling drowsy on top of being dizzy. I've started acupuncture to try to curb the headaches. Does anyone else experience intense dizziness and headaches with the cold caps? Any tips on how to handle this?
Any advice would be appreciated!
Erica
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ejp-
I agree, cold capping is worse than the chemo. You need to lie back in the chair. I was either in a lazyboy lounger type chemo chair, or a medical bed, you need to take the weight off your neck and back. I didn't figure out this out until chemo 3. Since I still had about 4 hours at home, I laid on the couch on my side, which felt better than lying back.
Elastogirl - my hair looks like yours. It has been two weeks since last chemo and my hair is falling out at an alarming rate. I need toppix and viviscal.
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Erica, use a neck pillow - the sort of U-shaped pillow. And definitely recline your chair
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It would be great if there were a cold capping success comparison study between AC followed by 12 weekly taxols, vs. AC followed by 4 bi-weekly, higher dose Taxols. My assumption would be better success with weekly taxol, simply because I lost essentially no hair on my 12 weekly taxol treatments (no AC)
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Hi
I am due to start Taxotere x 6. Last time I didn't try cold caps but am willing to give it a go whilst acknowledging the toxicity on hair. I have the back up of a wig.
It's 6 years since last round and of course new to cold cap.
Would appreciate any input. I will have tx every 3 weeks THP.
Also what does PFC mean?
Liz
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jackboo09, there is a ton of information on this board, go backwards reading and you will get a lot of your questions answered. If you still have questions, feel free to PM me anytime!!! PFC mean Post Final Chemo, something we all hope to be able write in a post sooner rather than later!!
PatinMN, agreed that it would be nice to have statistics to back up the cold capping. I have a local mentor who had the same chemo as me and she did very well with PCC. I am 4 AC DD every other week and then 12 weekly taxol. Weekly is consistent dosing but less than the 4 DD every other week a lot of people get for their protocol. Some women have hair grow BACK on weekly taxol. I hope I am one of them!!
For those struggling with the pain of cold capping, I take 800 mgs's of Ibuprophen in advance and that seems to help the first few minutes of brain freeze. I don't want to be sedated at all so this was a good compromise and is fine for AC. For taxol, I will move to acetaminophen. The neck pillow definitely helps!! I have a lounge chair I sit in and can doze off between cap changes. I also use an electric blanket PLUS a heating pad on my lap. I am not cold at all during this. Hope this helps some of you!
Off to AC #3 shortly!
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Hanging-In - I hear you about waiting to celebrate. On a similar note, I just celebrated my birthday, and we will celebrate a wedding anniversary next week. I told my husband that we will have to re-do those this summer. Also, lol about wearing a sun hat indoors, pretending it's normal. So funny because I am pretending a lot of things are normal.
LizJo - super idea about the headband! They sent one to me to wear the typical way, but with the coldcap, it slips down and pushes on my eyes. "I'm blind like a newborn kitten!" so I haven't worn it. Next time, I will wear it vertically to keep the cap pushed down - at least I will try that.
Soxfan75- cornstarch is what I use to make my hair look less dirty. I don't know if it's against the rules, but I feel like I can't go without it. I also try to gently lift my hair up away from the scalp so it doesn't look so matted.
ejp - I was more dizzy after the first round of cold capping than the second round. But after a couple days, it was mild. I don't know if it was from the chemo or the capping.
Several mentioned trouble with the chin straps. My problem with them was that it was pushing against my throat and made me feel nauseous. So I asked my husband to keep it further out, away from my throat which helped.
My fingernails continue to grow. I am telling myself that it's a good sign.
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Statistics on cold capping would be great, and the word needs to get out. I would not have known about cold capping if I had not read about it on another forum on breastcancer.org discussing getting through TC. It would also be great if DRs provided this information as complimentary treatment, even if the facility can not provide any support/endorsement There is an FDA approved model DIGNICAP https://dignicap.com/ which a facility manages, but not available in most places. I did lose more hair than I expected using cold caps, but my oncologist and surgeon were very impressed with how much hair I had left , and the oncologist has brought my case before the hospital board, advocating that cold capping works and should be made available to patients - but it is very expensive for a facility to do this.
One tip for those using pantiliners to protect ears or other areas. We redesigned the forehead protector. We taped a pantiliner to the original to use as a template, then cut a longer foam protector from the same type of craft foam - got it at Walmart. I looked for the pictures I took, but cannot find them anywhere,
Dry Ice........... call around for the best price/availability. In Boise, WINCO had the best price, and several places did not carry dry ice. It varied by 50 cents/lb or more, which can really add up. None carried pellet, but it was easy to put it in a cloth bag and gently smash it.
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