Cold Caps Users Past and Present, to Save Hair
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PCC are BETTER than Elasto gels or Advance, but buying Egs is less expensive and some cannot afford the PCC so EG can be an options but requires more changes. With EG you do lose more hair.
We started with Penguin then switched to elasto gel (order on line at HPMS or other site, @$85 each, need at least 6) but use the penguin protocol for hair care and times. I did testing of caps out of a -23C freezer and found elasto heat up more quickly so we cut the times: use the elastos 15 min for the first 3 caps (45 minutes total) before chemo and start chemo after you get the 4th one on. Then change every 20 min through chemo. For the 4 hours after, change every 20 min.
Do caps for several hours the day after chemo.
Keep each cap in a 2.5 gallon zip lock freezer bag when ever it is in the cooler to keep ice crystals off caps.
Take the cap out 15-20 min before you need it, check temp. If too cold, kneed it to get it ready. When at right temp, replace in cooler until needed. After a few caps, you’ll know how soon you need to take each out to have it ready on time.
Adjust time as you need. The sides with either type of cap tend to get warmer than the top. You might put a cut-to-fit piece of cloth or something in the top of the cap to keep it from getting too cold while the sides are exposed to the full ice treatment while in the cooler.
You will need at least 70lbs of dry ice. I get 40lbs in pellets and the rest in 2” thick 10x10 blocks. Put dry ice in zip lock freezer bags: pellets in one gallon bags and blocks in 2 gallon bags – zip ONLY part way. Dry ice will explode if it is sealed up.
Do not store dry ice in your living area – it sucks the oxygen out of the air. When traveling with it in a van or SUV – keep windows open enough to circulate air.
Place one gallon pellet bags inside of caps. Use ice blocks to line bottom and side of cooler. On the bottom put a towel over the ice blocks before placing the caps. Coleman Extreme 60 qt works for us. You might find that two smaller coolers work better because you can leave one tightly closed while using caps from the other.
Keep the cooler closed - the vapors suck the oxygen out of the air.
With Elasto Gels, have the chin strap hanging on your RIGHT side – this put the thicker part in the back where you need it. Do not put any cap over the cold cap. Make 2” wide elastic straps (21 to 23” long) with Velcro to go around the circumference of the cap and one to go under the chin and over to the crown of the head. Straps must fit tightly so don’t make them too long.
I made elastic bands like the PCC ones for around the circumference and one under the chin and over the head. Also make extras for whatever spot seems to need it. Two inch wide elastic with velcro sewn to the ends: one 21 to 23” long for the circumference and one 21” for under the chin and over the top of the head to pull caps tighter. Put a piece of moleskin when the chin hits the elastic on the over-the- head strap (get a roll at Target - Dr. Sholls section) for under the chin comfort.
To see what the straps I copied look like go to Penguin site and watch the video of a nurse putting the cap on a patient.
As for wetting the hair – we did not do this. Dignicap uses this but their system stays at 5 degrees F, much warmer than Penguins or EGs. Elasto gel instructions are all wrong for cancer patients. Times are way to long.
If it doesn’t all come together for you – just use an ace bandage, but cut it so you don’t have to spend so much time wrapping your head with each cap.
Use the moleskin (Target in the Dr Sholls section, it sticks to the skin) to protect forehead. Use something to protect ears - some use cut-to-fit panty liners or Ear Pops - we got Ear Pops from www.improvementscatalog.com for $7.99 a pair (1-800 642-2112).
Get a thermometer from Sears or somewhere like Northern Tool Supply that reads to -30C or -22F. Make a temp chart for reference during chemo - online has a C to F conversion table I find helpful to have with temps from +38F to -30F and the C conversion next to them. Just google it. If you can’t find the laser thermometer, there is a refrigerator one that Walmart had that goes down to 20C that you can hand in the cooler – better than nothing.
Get a twin size electric blanket to keep warm.
MOST OF ALL - I recommend reading the Cold Cap posts about using the caps. The hair care is important. Breastcancer.org, Forum: help me get through treatment, thread: Cold Caps Now and Then
Get an Extreme Cold cooler and keep lid tightly closed. Google “dry ice and safety” to see how to use it – VERY important info.
She should also go to breastcancer.org. click on Forums, go to "Help me get through treatment," and Cold Caps Now and Then" for a long discussion by women using caps.
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Hi ANg7- great news, any little bit will help! I have heard others say up to 1000.00 but may be another insurance company! Hopefully Frank will help! Thanks for the update!!
Elizabeth/Yizbieta
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Debrox- I asked a dermatologist about the itchiness and even sores that I get, and some really large flakes too- like a film of skin that starts peeling off in places- I thought the flakeys were freezer burn results or something and was notsure about the sores- that look and feel like little bites- and they ITCH terribly- and he said it was the washing schedule- that was only his opinion, he did not examine me, but he said hair needs to be washed more often than once a week-and that it can cause irritation and itchiness. Mine bad itchy days passed though after chemo number four. I am okay now - my hair has gotten used to the washing schedule, I think? Scratch gently, if you can though it was hard for me to do that.
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i just noticed flakes on my scalp this morning. Glad to hear it goes away.
Yizbieta - what kind of treatment are you getting? are you taxotere?
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Hi- about to start TCx4 in few wks. Was going to do cold caps, then changed my mind-they seem so labor intensive. Then read there can be permanent hair loss. So, rethinking decision. Just how labor intensive is it? How many helpers do I need? My daughters want to help me and it might make them feel better too, having something active to do...
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ASMD: I am using the ElastoGels and they are a lot of work but well worth it to most of us. Your time in chemo will go so quickly while you change your caps every 20-30 minutes. It is amazing how quickly it goes. Keeping busy then is wonderful. Then we wear ElastoGel caps home home during the week - I only use them a few days after chemo and a few days in between. The cold stimulates hair growth.
The worst part of it all is washing your hair in cold water. I'm bad and wash mine in tepid water and rinse in cold water and continuing this process for months after chemo. I'll have #4 on Monday.
It is so nice to be out and about and have my hair. Yes, I've lost probably 50% of my hair but only those really close to me notice.
This is a decision you have to make but you'll find that most here are happy we went with the caps.
Good luck,
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One helper should be fine but I always had two people with me. I posted some photos on the thread in the past two months showing my hair. Caps worked well for me and I have a full head of hair. Doing the caps kept us busy all day and kept my mind off chemo. So glad I did it!
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LivCar-
Yes, I am on TC Taxotere and Cytoxen. Every three weeks for 6 treatments. I have my fifth treatment on Firday. Cannot believe I am almost done. Last treatment is June 24th. CELEBRATING then!!! Cannot wait to send these caps back! Ha ha. My dining room is the cap area- when I come home from the infusion, I sit there and my sister and sig other put them on me there. I will get my dining room back! I will not have to dry out the plasitc bags! I will not see them in my feezer anymore! Yay! But I am grateful for them. I can look in the mirror, and though my hair has thinned considerably and it is not over yet, I am able to pull it off in public that I have hair and more importantly, I have my own hair that seems to be hanging in there, as it were. I am grateful. It has been and still is a hard road, but worth it, I think.
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Arlene A-I am also chicken about cold water- My water is about one or two degrees above cold- more on the tepid side. I wash, then condition, then tie it up and take a regular, normal shower in my lovely hottish water after I am done with the shampooing. I comb it out in the shower when I rinse the conditioner because then the combing is not as bad. My little tiny bit of hair is still long so that works best for me. And I get to relax and enjoy that hot shower that way! YAY that you are almost done!!!!!! YAY!!!!! WOnderful!!! Congratulations!!!
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asmd - completely up to you of course- but if you have helpers who can do it, and you can manage it financially, why not try it?? I DOES keep your mind off the chemo a bit, and it DOES give your daughters a way to help you. My sister is so happy that she can help- though I never would have asked her- she needed to do something- there is so little that people can do for us- you know? The thing is, it is stressful until you let go of the idea that it needs to be 100% effective- at least for me it was that way. I now have a back up wig in case I lose it all one night and then I am 'covered' so to speak. I have probably 1/3 of my hair left and that looks normal to people who don't know me, and it is a comfort to me when I look in the mirror- I can say to myself that this is more familiar than the bald head would have been. It does make me feel better- even if I know it is not all the hair I used to have. I go out in public and see women with scarves and wigs (some you can tell and others you can't- they actually look great for some people), and I am grateful that the general population doesn't have to know anything about this - they don't treat me differntly unless I want them to know about my health issue. That is how it helps me. I have to say, I still have hair envy whereever I go- it isn't thick anymore, I can't run my fingers through my hair or wear it different ways most of the time-because it shows some of the bald areas too much, but mostly, I am happy with the reults, compared to bald- and I am so grateful to have my hair. Those are my thoughts and experiences.... hope it helps and good luck with your treatments!!
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asmd- oh I forgot to tell you that once you get the rythym of the procedure it goes well-and it is only difficult for that one day as far as the caps are concerned, for each chemo infusion day, that is. But as for learning the procedure, just get the first time done and you will have it down. The helpers need to do most of the work- just make sure they follow EVERY step as it is laid out. THen you have the best chance. ANd do everything Frank and Geralyn say to do. It is all very important but you get used to doing it all- it takes some time for the hair care procedures to sink in but it is pretty normal now (after the second time, I pretty much had a routine of how to care for my hair)-and you only have four treatments! Use this site a lot- read it through...anyway, I wanted to answer that question that you had. Again, hope this helps you decide.
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i agree with the other ladies. Having my own hair is so worth it. I was out today shopping. I'm not happy with my thin hair - but only i can notice. No one would know i'm going thru chemo. Even better ... when the strong winds blew, i wasn't worried about my wig falling off! Go for it! You have nothing to lose but hair! And .. you'll feel like you're fighting back.
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I totally agree with all the others...
Having my hair gave me some control and it was nice for people to not know I was going through cancer treatment. It also made things more "normal" at home with my children.
My oncologist researched the Penguin Cold Caps extensively and she felt comfortable with my using them. I am very grateful to Frank and the Penguin Cold Cap team.
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Hi Had one round of taxetore and cytoxin using cold caps. Chemo went really well, but now I notice that my scalp is flaking a lot, mostly near the top and forehead scalp line. Is this frosbite? What should I do? Next chemo scheduled for June 3. Thanks for any adivce.
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hadle - I have the same thing. My research is telling me it's the lack of washing, not frostbite. Just keep doing what you're doing. It should go away as your hair adjusts. In the meantime, you're not the only one that looks like they have dandruff!!
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Ugh I see what you guys mean about hair wash day. I washed my hair today and yes there was a lot of shedding but my scalp feels so much better. There was quite a lot of buildup on it. Hopefully oil production slows down soon.
I actually washed 2 days early as I couldn't stand "helmut head" any longer. I'm still 9-13 days to the 18-22 day post treatment shed. Hopefully my hair hangs in there. It is so fragile!
I did accidentally burn (frostbite) my temples. They are tender to touch. Hopefully this is gone before next round of caps!
Ironically I washed today because I was going to the Look Good Feel Great program. I didn't want to show up with super oily hair that looked completely wet. They wanted to use me as a model to practice tying scarves etc. And have me clip my hair back. I didn't want anyone touching my hair. It's far too delicate!
Asmd: the caps do make time fly by while undergoing chemo. They also take your mind off the whole process as well. If you proceed with caps, purchase an electric throw and bring soup or tea in a flask. I also took a painkiller before starting, helped with easing into the first 2 caps.0 -
I decided to do it and my daughters are thrilled; worth it for that alone. Here's my plan. My hair is shoulder length, almost completely gray, coarse and thick. I can't color it, correct? So, I thought I'd cut it shorter and buy a wig, and when it starts growing out and I can't cover the gray, I'll use the wig. Until I can color it again. Would that work?
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ASMD: You are not supposed to cut your hair this close to starting chemo either...it stresses the roots. Congratulations on your decision to use the caps and I don't think you'll be disappointed.
I wish I had cut mine shoulder length or shorter before I began.
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asmd- great choice- you will not be sorry, most of the time
How wonderful that your daughters are happy! YAY!I am not sure why you would need to cut your hair. I did not because the whole point was to keep things as normal as possible, but my hair is very long - I have not cut my hair in many years so that would have been very foreign to me- maybe you are used to having different lengths. I have also heard that cold caps work even better on thick hair- thin hair is harder to keep. Good luck and keep us posted!
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Oh and that is correct- no coloring
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asmd- I have two helpers- that is about all the nurses will allow in there with me, and they work hard, both of them. I think two is a good number, if you have two. One could do it, though, for sure.
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foxybrighton-
It is difficult- and I went through a traumatic fourth chemo as well- I find that interesting that you did too. I thought it was the terribly negative nurse I had! I cried eeach time she went out of the room- she was telling me I was going to lose my hair after the last (6th) chemo! She was yelling at me for having gained 7 pounds and other things too. Anyway, maybe it was also cummulative effects, since you did not have a grouchy nurse. It was the most difficult with the caps as well- harder to tolerate- but I did it and I still have hair. I go again on Friday, June 3rd for my fifth cemo. I just have to get through two more. Keep going!!
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asmd-I did color my hair 1 week prior to chemo and things went well. I lost a great deal of hair the first tx around the ears and sideburns but had much less the 2nd tx. I will go tomorrow for #3. Good luck!!!
Chris
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I wanted to give an update on my hair. I finished my last TC treatment on 5/4. I washed last Friday and had another big shed for several days. The other big shed I had started around day 22 after my first chemo (on the day of my 2nd chemo). I will wash again tomorrow - I am still only washing once a week. I need to color my hair horribly and have the no peroxide/no amonia color kit on stand by but don't plan to use it until shedding slows down. My hair has grown at least 1 1/2 inches since I started chemo and is in bad need of a good trim. I think I have about 75% of my hair. Since my hair is long the bottom part looks more sparse but once I trim at least 2 inches off it will look thicker I am sure. I still like to put in 1 set of hair extensions especially after I have gone days without washing because my hair looks more flat and thin after a few days. On the day of washing and day after it looks better and I often don't put in the extensions. I hope to be able to color my hair by next weekend...crossing fingers! I think that and a trim would make me feel so much better! Lashes are hanging on for now.....we will see. Brows have thinned - especially the L one so I hope that in the next week they begin to grow again so I won't be brow-less! Still not shaving legs or under arms which is just fine with me! I still have some arm hair - maybe half of that. I am just trying to get through what I hope is the last "big shed" and waiting to color.....
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Mdg: I finished chemo on April 15 so just 2 weeks ahead of you. Exactly same stage now with you. Eyebrows thin, starting to grow. Eyelashes ok, thinner than normal but fine. Watery eyes have cleared up so eyes fine now. (terrible tearing especially in the wind for about a month) not shaving legs or under arms yet. Still shedding when I wash my hair. In fact, MORE than during chemo! Afraid to add the desparately needed blond highlights until this shedding stops!
Went to Pilates class yesterday and I'm less limber than before chemo. Especially my legs, although I've been walking 2-3 miles almost every day throughout and post chemo. Anyone else have symptoms in your knees and thighs? The oncologist told me a month ago it would get worse, then go away.
So thankful for PCC. I doubt I'd be out walking in this Texas heat or going to Pilates in a wig. Makes such a difference to me to move on with life with hair! (Exchange surgery next Friday and I can't wait!)0 -
HI Maria and Howard -
I am in sync with both of you...I am 5.5 weeks out of my final chemo. No real hair growth on legs, under arms or down south. My hair on my head has at least two inches of gray. Not real pretty! I have lots of regrowth everywhere I lost it on my first cold cap. I have chickened out on the coloring. I am hoping that i can color next week. Eyelashes about the same, a few holes. Eyebrows are normal thickness...seemed to come back with latisse.
Soooo thankful that I had cold caps! Have a great day everyone!
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Wow! The horror tales of post chemo. We only thought it was bad during chemo but it sounds like it gets worse after. Oh well!
Thanks for the updates ladies (I think).
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Hi MDG I too have the crazy leg pain! Now they are getting heavy. Hi arlene good luck next week:) I will be thinking of you.
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It is all good....no horrors....just some discomforts! My legs were heavy and uncomfortable (actually swollen) and they got better a few days ago at week 5 PFC.
Oh, and I JUST COLORED MY HAIR BY MYSELF!!! It is still wet, but will let you all know how it goes!
Annie
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Sorry, I was talking about the hair issues.
Thanks NMoss. How was #4 for you?
Funny, I have a bit of the heavy legs but my arms seem to be feeling it more than the legs.
Annie: Let us know how the coloring goes. Fortunately I don't have that to worry about too since I don't color (well yet).
Arlene
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