Cold Caps Users Past and Present, to Save Hair
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Hi good morning, after talking with the representative of Paxman cool capping i decided to use Penguin. She said the % is 50 50 and that my treatment is tough she said the temperature of the machine is -4 in compare with Penguin -35 and the time in total is like 30 minutes before chemo and 120 after it is expensive so i guess that is the reason why maybe it is 50 50. I hope Penguin works as with everybody here. I start Wednesday do you think i can color my hair today with a non amonia tint?
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Thanks for the responses. Chemo day for me is Monday and I washed on Thursday. I thought I had done it wrong, but looks like I'm ok. 2nd Treatment is this Monday. I have had some shedding but nothing noticeable. I am going today to pick up stretch net at CVS to keep my hair from getting caught in the velcro this time around.
This week I felt almost back to my old self. Not looking forward to next week. Although, I did manage ok, I had some diarrhea, joint pain, headache, and mouth sores.
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vivianlu, coloring your hair at this point is a no-no per Penguin instructions. However, I did it about a week before starting chemo, with no ill effects. But I had weekly taxol, which is the chemo with best cold capping results.
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MJPow - when did you notice your shedding slowed down? Do you use anything for your lashes and brows?
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PatinMN - when did you find your post chemo shedding to taper? What percentage of hair would you say you lost? Thank you!
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vivianlu8,
I would not color you hair within 2 weeks of your first treatment. t's not worth the risk. Color weakens the hair follicles and could cause the hair to fall out after chemo. I think you made a good choice with Penguin Caps. There are several Youtube videos out there to show you how to put them on. You will need at least two people to go with you to help you put on the caps. Make sure the caps are at least -32 degrees Celsius in the middle, the sides will be a little warmer. Make sure the cap is snug on the top of thehead and around the sides and hairline of your head. They give you a headbands to put around your hairline and be sure to use them. I use stayfee pantyliners to protect my ears and skin around my face and the back of my neck. You Can you cut them to the size that you need. Good luck and let us know how it goes!
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Thank you Pambbc and PatinMN so i will stay without coloring my hair. I will do exactly as you said. I will try to rehearse all the weekend. What should you recommend to use in my hair instead of mouse. I have curly hair and without mouse it comes frizzy. So reading all your posts almost all of you have used Accure clarifying shampoo and conditioner right? Any other suggestion?
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Pambc... $100 a day for Dignicap? That's a deal. Mine was $600 per day for the Dignicap on top of the four hour round trip.
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sherryowang, I didn't lose more than 5% of my hair, if that. Shedding was so minimal that I couldn't say when it ended. When I went in for my first trim after chemo (can't remember exactly, but probably a couple months PFC) my stylist told me my hair seemed thicker than ever (!).
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ykh- I think after my big shed about 25 days in it slowed a bit but still got big handfuls until I started taxol. It slowed way down on taxol although still shedding its only a little on my wetbrush every day. Hoping it Holds on for 8 more! I am going to get my wig today just in case. Overall I am happy with my results with penguin. I knew going in the ACT is hard to predict.
I think having the same people every week that knew how to cap me was important. I never made it through the full time after even now with taxol I do 2 hours not 3. I used a hair nets cheap ones I got on Amazon to help with the taking off the caps and not pulling out my hair. I also would put moleskin first on my forehead leaving the sticky part only on the bottom leaving the paper on the top partso it wouldn't pull out my hair I put a pantyliner over that to help with the cold.
I did not put anything so far on my eyelashes but did put stuff on my brows that someone recommended chemo brain I can't remember what it was called I'll look when I get home! Some kind of oil!! I have heard they can fall out afternoon chemo so I'm just waiting to see.
My oncologist was super skeptical in the beginning and said it won't work probably. On Wednesday he said I had the best results he had seen on ACT. I love proving people especially doubters wrong
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Hi all,
I started AC chemo on May 12, dose dense, with the second cycle on May 26. Today I'm 3 weeks from my start date. I chose to use Penguin Cold Caps because of their confidence that it would work for AC chemo.
The abnormal shedding has started, but I still have plenty of my hair. The PCC website assures that you will keep your young and mid-aged follicles. Apparently the old ones will shed and can't be saved by cold capping.
Here's my hairball from my gentle combing today.
My young hairs are holding on.
My part is still dense.
<Arg! It won't let me post pictures. I'll try again later.>
Here in the SF Bay Area, a former capper became a rep for PCC, and she has built a side business of providing trainers or assistants (herself or some other nice people she has trained). My husband isn't the best with learning from printed instructions, so we decided to hire one of the assistants for a training session for our first capping for an extra $250 to stay with us through the actual infusion time. It was side income for her, and we were glad to pay it, especially after we met her! Talk about money well earned!
It made a huge difference for getting the technique right. There's really not a lot of room for error. We learned that the AC is taken up from your bloodstream into the tissues with 5 minutes. If you don't chill the scalp down for just a moment, the blood will flow there, bringing the chemo with it.
Another thing that has been immensely helpful is that years ago, I stopped washing my hair every day. I had been reading up on how to stop my greasy scalp and dandruff problem, and came upon some message board of people who stopped washing their hair with shampoo every day. I started doing that and never turned back. My hair adjusted and started producing just enough oils and sebum that I was able to go 5 days without washing and not see any grease.
I would highly recommend that everyone reading this, those who have some time before starting chemo, to start training your hair to produce less grease. Stop using shampoo on your hair today. It will itch and grease and flake up like mad. Just endure it for 3 or 4 days until you can't stand it anymore. Then allow yourself one good shampooing. Then go again without shampooing for a few more days until you can't stand it anymore. In a few weeks, you can go 5 days or more with a fresh-looking head of hair. It's worthwhile to do, especially since that's the washing schedule once you're on cold caps.
Hope this capping will continue to work! 3 weeks down, 17 weeks to go.
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Thanks MJPow. Do you use castor oil on your brows? How much hair did you loose so far? I am going for my last AC next week and then will start weekly taxol. I am shedding a lot, I don't think it slowed down yet. I think I lost a lot, but because I have curly hair, it creates volume. If the shedding doesn't slow down, I don't know how much will be left by the end of the treatment
I am following all Pinguine protocols, may be not drinking a gallon of water as recommended. Anyway, hoping for the best!0 -
elberama- I wish I would have read your post before my first chemo. I remember having to do a cap change during my AC infusion. I thought it was so nice of our male nurse to get out of our way when he was pushing the red devil in me. Now I'm nervous that my head warmed up during the change. I'm day 10 chemo and I feel a few tingles in my scalp. No shedding yet
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ykh- I lost about 50% I have curly hair too although you can't tell from those pics if I fluff it seems to help hide the balding areas. Mine did not slow too much on AC but definitely has slowed on taxol. I did get the toppix it helps and yes castor oil on the brows
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I am in need of some hope also. I'm on day 20 after first infusion of TC. I've been shedding for a few days. This was today. Am I going to make it without having to wear a wig? Next infusion is Monday.
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rdsm--You are right on schedule. Don't panic. It seems you are starting "the big shed" which is anywhere from day 19-25 after first infusion of TC--I can't comment on other regimens. You may get that much the next couple times washing. After the second infusion there's more of a shedding on clothes instead of clumps although always more combfuls come out on wash day. I was able to fill a half gallon baggie by the end and that didn't include the hair I found on my clothes, in the washer (seemed to find hair balls in there that hooked on to garments) or sweeping/vacuuming my floors. So I know I lost 50%. My ponytail is SO small and I have hardly any sides. What I have noticed was how thick my hair still was 3 weeks PFC compared to now which is 18 weeks. It SLOWLY sheds for months. But I feel the last few weeks I'm back to the regular amount coming out. Here's the most recent pic of me. I FINALLY colored it this week with ammonia free Clairol Nutrisse. I tried doing it 3 weeks ago but I was chicken and washed it out so soon that it made my light grays dark gray instead of covering them . I must say that I feel like using the L'Oreal cover up makes it difficult to come through by day 4 and I feel more comes out on that day because it's so stiff.
So it looks like I have lots of hair but I have to pull the hair from behind, forward. My sides are REALLY thin. See the difference if I forget to pull my hair forward, you can see right through my sides!!:
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Amapola36 - is that a clump from just one part of your head or is it from all over your head? Is this the same amount, more or less than you shed during chemo? I am 6 weeks PFC and I am still shedding a little bit but much less than it was. But I didn't have a ton of hair to begin with so I never got quite the pile you have there. So I dare say it could just be relative to what you started with. Does that make sense? Since you're all done, try not to fret - it will slow down.
Rdsm - someone here said the first shed is the worst. And at day 18, 19, and 20 or so, you are on the typical schedule with shedding. That's about when mine started. I think you will get by without a wig. And there are so many products available to help hide thinness. Patience has never been my thing, but it's required here.
I do have good news - while I can't see any new growth on my head, I am seeing it in other parts of my body so I am thinking if I am having similar growth on my head, I won't exactly see it. The thinnest part on my head is the crown and I just can't see it even with mirrors. Surely, if the other body hair is growing -which were not cold during chemo, then my head should be getting some growth. Though I think I am still shedding. Crazy stuff - strangest science experiment I ever tried.
Hang in there everybody!!
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Pamela23--congrats on your color!! And you look great! Your hair looks fabulous
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Elberama, I'm in the SF Bay Area too and really pleased to hear your experience with the Penguin rep helping you at your first time, because I am just about to start in the next two weeks and we decided to pay for assistance the first time too. I'm really glad you felt it was worthwhile to do that. Also your comments about not shampooing daily are good to hear; I actually have not shampooed daily for a few years now since I like to take baths in the evening, so I usually shower just 1-2 times weekly to wash my hair and have baths on the other days.
Because of what the Penguin materials say about shampooing in cool/tepid water, we decided to upgrade our faucet in the laundry room and got one with a pullout spray, so I can wash my hair in the utility sink instead of having to take cool showers or use the kitchen sink (I also got a hair snare for the drain). I'm short (5'2") so I think I will have to stand on a step stool and lean over! This may sound silly but does anyone have any good suggestions for this whole process to keep from spraying the whole room and having water everywhere...I have not washed my hair in a sink in probably decades, so it will be yet another learning experience in a year of learning experiences. :-)
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hi everyone! I wanted to share with you my major shedding days. It always happens when I wash my hair and slows down 3 days later. The picture shows:
Bag 1 - after washing 2 days before second chemo
Bag 2 and 3 - between second and third chemo
Bag 4 - 3 days after my third chemo (yesterday)
I have noticed that I shed huge amounts of hair every time I wash it. So I waited 12 days to wash it the last time (I know, it was absolutely gross, but I stayed home. Every time my scalp was itchy I tried not to scratch. Instead, a few times I put coconut oil on the itchy spot only. Then it finally stopped itching). My PCC cap assistant told me that all my hair would shed when I washed it post 3rd chemo. Well, he was wrong. I shed much less than prior times. Here is the proof:
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This is how my hair looks today, after washing it 3 days post 3rd chemo. I stopped coloring 8 weeks before chemo. I have a lot of gray.
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I wanted to add that I only saved in each ba the hair I shed every time I washed it.
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I am on day 20 after my first TC chemo. I had the huge shed yesterday. I am thin on top now but there is only a small area on the crown that I would describe as a bald spot. If I shed like this every time, I may not have much hair after the fourth treatment so I am heartened by those of you who say that the first shed is the worst. I go for round two on Tuesday afternoon-- my husband has ordere the dry ice and is ready to be my capper again. He says he doesn't care if I lose all my hair--he loves me either way-- but he knows how important this is to me. Sending good thoughts to all of you.
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I love this group! Thank you all for sharing your pics and positive encouragement. It is so helpful to see what everyone is experiencing as it gives me hope that things will work out ok, even when they seem like they may not. I keep reminding myself that I am doing this so that I can be healthy for a long time for my family. The hair loss is a temporary thing and it will be over soon enough. I'm glad we all have this great place to be able to get and give support to others going thru the same "yuck" as we are.
I have been taking photos to document this cold capping journey so that I can share my experience (and hopefully success) with future cold cappers.
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Pamela and cali58 you look great!!!
I used the wetbrush on Amazon like $8 instead of a wide tooth comb. It goes straight through tangles for me where the comb got caught might be worth a try for some of you if your hair tangles easily!! Lifesaver for me
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MJPow - what do you use for icing hands and feet during taxol? Do you need to ice them for the whole infusion time?
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Radmonkey - I also had a cap change during the infusion, but my head was ever bare for only about 15 seconds before the next frozen cap was draped on, and another 30-40 seconds to tighten it down. I am counting on the fact that the below-freezing temperatures of the caps would give me at least that much time. The assistant changed the cap like clockwork every 25 minutes during my first infusion, and the Adriamycin took at least one cap change to do. For my second cycle, I noticed that it took a couple of minutes after the last cap for my scalp to start losing the numbness. I think you're OK!
The assistant had us set our phones on a 15 minute timer after the last strap was secured. When it expired, then we set the timer for 8 minutes, and took the next cap from the cooler, and measured the temperature to make sure it was at or below -30°C. The remainder of the time was spent shaping the cap, wiping off the frost, and softening and evening out the frozen goop. When the 8 minutes were up, we quickly made the cap change.
Another useful thing was she brought a blanket to lay out, and the removed caps were tossed onto the blanket so that you would not worry about getting the cap dirty or messing up your table or floor from the frozen caps, and so that the new cap can be put on ASAP. That blanket surprisingly made the operation be focused on speed instead of wasting time being tidy.
Radmonkey - Sorry to read about your nausea! I was lucky. I got a ton of premeds and didn't feel lasting nausea for the AC either time so far. I got intravenous EMEND 150mg, pills of Zofran 16mg for nausea, and Dexamethasone 12mg as a steroid. I was sent home with Zofran to take morning and night for at least the next 2 days, then as needed, and Compazine to layer over the Zofran as needed. I took the steroid at home at 8mg for 2 more days. Every time I would feel a hint of nausea, I'd pop a Compazine and I was good for another 6 hours at least. Hope you have a better experience this week!
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Ladies and gentlemen I have a question for you, my core need biopsy showed I was ER+PR+ and HER2 negative. On May 22nd I had my bilateral mastectomy and my final pathology report that said I was triple positive. Does this change the game for cold capping? I read that I may have to take herceptin for a year. There is no way I can afford the cold caps for a year.
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KCMC, herceptin doesn't cause hair loss, so no need to cold cap while on Herceptin alone.
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Hello Everyone,
I haven't been on in a few days and catching up on all the posts. Someone asked about shampoo. I used LOMA, someone at my ONC office recommended it. I bought it at a local salon. Also heard whole foods brand-365 has shampoo & conditioner that is ok to use.
Pamela23, your look great. I'm only 10 weeks PFC and can't wait to color. My hair looks like yours--thin on the sides.
Does anyone have any suggestions for helping with eyelashes growing back?
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