Cold Caps Users Past and Present, to Save Hair
Comments
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For those who are also icing their hands and feet? How do you do it (instructions)? Also, do you continuously ice or do you take breaks?
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phaila - how is the shedding going? I have been following almost your same pattern so I am hoping you say it has finally stopped for you!!
Aimless - that is pretty much the look I have now as well just without any major bald spot to cover. I agree, it is amazing to see the differences in results, even for people on the same regimens.
KD2016 - I am in the same boat. I am 8 weeks pfc today and still shedding. I have easily lost 50% of my hair since chemo ended - that doesn't count what was lost during. It has thinned all over so I still manage without a wig but not sure how much longer I can do that. Just taking it day by day and hoping each day is the day it stops shedding!
heidi16 - I think we were on similar schedules so I am hoping that we both stop with the shedding soon!! It is making me crazy!
Icandoallthings - seriously amazing results!! What a success story!
I think the fact that I did 3 TC and then 1 AC hit my hair really hard - like I got that first round loss from both sets of drugs. Through the 3 TC's I did really, really well but man, about 2-3 weeks after that AC my hair just freaked out! My sideburns are growing in again but I think I have had so much last stage loss it is going to take a while to return to any kind of thickness. I have to keep reminding myself that most of the loss was 3-4 weeks ago so it will take a bit more time to fill in.
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Kechla, icing 15 min before chemo, during chemo and 15 min after. Here a picture how they over me at MSKC in NYC.
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I recommend Penguin cold caps, they seem to have the best reviews. I have been using them during my Taxotere, Herceptin and Perjeta regimine. I have had 4 of 6 treatments and have had minimal hair loss. Hope it stays that way!
Best,
Kathy
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Amyabs - what's puzzling for me is that I was doing well through the 4th cycle of TCHP, and shedding started with the 5th and got much worse after the 6th and final cycle, and continues. I don't have to wear a wig yet either, but not sure for how much longer. So frustrating. The reps at Penguin are not much help in providing any answer unfortunately.
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that "cross your fingers" moment when you make eggplant Parmesan and just hope that no hairs end up in it! They're freakin everywhere and I just never know!
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Heidi and Amyabs- I kind of stopped looking. It was freaking me out too bad. I am taking regular showers and using that FAST brand shampoo, so we will see. I'm hoping that with cutting an inch every month I will have 6 inches of hair soon and then I can figure out something to do with my hair. I've never ever colored my hair so I'm not really sure what to do about all that. Well I did dye it black in the new wave 80's but since my hair was really blond them it turned out a vile green color nstead of black! 😜
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Viktoryak, do you ever take breaks? Do you think a sock over the fingers would be ok? Don't want to get frostbite... ??
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Willa- propofol and dilaudid will work just fine for your port surgery. I think you'll be glad you got it. No point in messing up all your good veins. And I think a lot of people on chemo end up going in at some point to get IV fluids. I did twice because I was so dehydrated.
KD- my PFC 3 month anniversary is on the 19th and my shedding has stopped. It's just normal hair loss now. I hope all you ladies are getting close to the end of your shedding if you're at 3 months. My dr was also surprised when I told her last month I was still shedding. It's new territory and until they have more patients do it, they won't know stuff like that.
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kechla- I iced my hands and feet throughout chemo. I wore thin socks and gloves and then I stuck them into bags of frozen peas. I did not take breaks except to go pee or to drink. I also sucked on ice the ENTIRE time. I'm not sure if that was why I had ZERO mouth issues during chemo. I also had zero neuropathy
I also wanted to tell you how furious I am for you that you have breast cancer again! I'm so so sorry:(
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Kechla, I would take a few seconds break when it was too cold. I don't know about glove or sock over fingers. I was ok without it. But the beg is double so you don't touch ice with your hands... But the truth is, it was so fricking cold to do it but no frostbites for me. it is doable you can do it!
Good luck!
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Runner70 - Thank you. By the end of 3 months I probably won't have any hair left. More than likely I'll end up getting a very very short cut, and start wearing my wig. My treatment was (on going with antibody infusion) at UCSF in San Francisco and they tested Dignicap in 2010, and were advocates for both Dignicap and Penguin cold cap since then, they have the freezers as well. I would have used Dignicaps but at the time I started chemo, they were still in the process of signing the contract with Dignicap. I first found out about cold caps from my oncologist, so I had high hopes.
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Today I had appointment with my MO before my Herceptin treatment. Since I haven't seen him after last chemo , I was bragging to him about my hair that cold caps worked. He was not against it but all the time would tell me that it Is a pain in the butt why do I want to do it...
So today, he admitted that I have a good result compare to others and then he said : " well but maybe you were in 2% of people who doesn't loose hair on Taxol"...hmmm....really? He is telling me that after we paid so much $$$.lol.
But somehow I think it has nothing to do with 2%. But it is just worked.
Good luck to all of you who still doing cold caps. It is not easy but you can do it!
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Thanks Phaila and Viktoryak. Yes, the recurrence does suck! Hoping to get it gone for good this time.
I'm hoping I can handle the icing. I'm going to try it. I do have mild Raynaud's, so will need to be careful of that. Thanks for the picture. That helped me understand
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hey KD - just letting you know you aren't alone here. While many have great success with cold caps, I did not. I'm now at 5 out of 6 TC treatments with about 20-25 percent of my original hair left, and still shedding a little bit each day. Two huge bald spots on top. I have to wear headbands, hats, or wigs when in public. Very disappointed. My single hope now is that the hair comes back once I'm done. good luck to you and keep us updated.
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Runner70- Thank you for your comments on the anes/port situation! I still really don't want to do it but it seems for me and my veins there are no better options.
Looking forward for all of us to better days ahead filled with good health and some truly awesome hair days
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Does anyone have a picture of the penguin cold caps in their boxes (wondering how much space to clear in my freezer)? Also, any pictures of them packed in a cooler with the dry ice?
Do most of you use 30 lbs of block and 20 lbs of pellets in each cooler?
Can I use our standard sized coolers or do I need to buy the Igloo cubes?
Vent... this process is a bit overwhelming... Ordering and arranging shipment of the caps is no easy feat and coordinating the dry ice seems challenging. And 9 pages of instructions on how to use. (My husband is doing most of this for me thankfully.) I'm sure once we've done it once it won't seem so bad, just worried about getting it wrong.
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Kechla: I don't have any pics unfortunately and we are able to use a biomedical freezer at the infusion center BUT I wanted to say that it helps to lay the penguin caps flat in ziploc bags, outside their plastic containers. Not sure if the instructions mention that as my husband is thankfully in charge of that part. The caps are much easier to shape to your head when you freeze them flat. You might want to number the bags too in case you need to re-use them at end of day. The plastic container for each cap is 9.5 l x 6.5 w x 5 h. As an aside, we had a harder time than expected with the first couple of caps. Initially it was difficult for me to keep the cap properly centered and smashed down super hard on top of head while my husband killed (?) me with the wrapping. When I became less nervous it was easier, or my balance was better. Caps are heavy. Ativan.. The process itself was not as bad as I expected and I am a huge baby.
I wanted to also say I'm so very that you have cancer again. Sending good thoughts to you. Hoping the caps work great.
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Kechla, I got 2-gallon sized Ziploc bags, put each cap flat in separate bag and stacked them this way in the freezer. This way I only had to clear one shelf. This procedure is approved by Penguin.
On the day of infusion, 3 hours prior to the appointment we would fold the caps per Penguin's instructions and put them in plastic boxes supplied by Penguin, and then into the coolers with dry ice. I had 8 caps and we numbered each box from 1 to 8 so we would know in what order to use them and reuse them.
I had two coolers - they were passed onto me by a previous capper. Later I replaced one because the old one started to crack. We would buy 80 lb of dry ice in slabs, each slab was 10 lb. We would pack the caps in the following manner:
Cooler #1: 1st slab at the bottom, caps in boxes # 5 and 6, 2nd slab on top of that, then caps # 1 and 2, 3rd slab on top of them, and the 4th slab on the side of the cooler for extra coldness.
Cooler #2: 1st slab at the bottom, caps in boxes # 7 and 8, 2nd slab on top of that, then caps # 3 and 4, 3rd slab on top of them, and the 4th slab on the side of the cooler for extra coldness.
During chemo, when I was done with cap # 1 my husband would put it at the bottom of cooler # 1, then he would do the same with cap # 2. So, each cap that had been used, was going to the bottom of its original cooler to refreeze.
I had two timers with me. First timer was set for 10 minutes before it was time to swap caps. This way my husband had adequate time to prepare the next cap - knead it and make sure the temperature was correct. Second timer would go off and we would switch the caps on my head.
I had pretty good results with capping, nobody would know I went through chemo. I've posted plenty of photos on these boards, so I won't be boring you with them. My hair is frizzy now, but thanks to this it looks like I have more hair than I really do. Beats being bald in my book. I think I lost about 20-30% of my hair, and I was shedding for about 8-9 months PFC. I'm about 15 months PFC now and my hairstylist says that my hair looks very good and it seems to be getting thicker. I must stress - we followed Penguin's instructions as closely as possible and I babied my hair for a very long time.
Good luck to you.
BB
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Edu, Thankyou so much for your kindness and strength it brought tears to my eyes! Just what I needed! I'm sorry that we are in same boat. I'm not a vain person but we hve little control in this and just like all us dealing w this I wanted to keep something of mine. I'm still shedding and need to wear something but not sure what. I don't want a wig that looks like doll hair. Any suggestions anyone??
I'm also considering switching to Peguin but it seems more intimidating. Don't knw if that will help me. I hve 2 more cycles to go and I need to do something I hve 2 large bald spots that I'm hving hard time covering. I've probably lost 70%. Should I shave or keep whatever is left to meet w new growth?
There's one thing I don't get, when doing the caps I specifically remember bc of the intense cold where I hve bald spots that's where it was the coldest. I made sure that it was tight all way around coldest was on top and back of my head and that's exactly where I have lg bald spots. Anyone else?? The caps do cover good but I knw human error can happen. The first time I thought they weren't cold enough so next time I made sure that they were and was tight. But lost more hair after that one. Did the cold burn my hair/scalp? Every time we use caps they should stop that infusion from reachingscalp.
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Kechla - ugh. I think I must have given you the wrong advice about the cc/ziploc bags. I'm so sorry! Please disregard. BB - thank you for clarifying. Your hair is phenomenal!
And Meow - thinking of you. I wish I had something intelligent to say about the capping issues but I'm not far enough along.
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Bb, what treatment regimen were you on? I truly believe it makes a difference. Happy for your results!
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ladies, I believe cold caps work well on Taxol all other regiments are hit or miss. So it does matter what chemo regiment You do.
My heart goes to you ladies who went through pain of cold caps and had bad results.
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has anyone had their hair colored after chemo? I am 3.5 months post final chemo and am wondering if I can get my hair professionally dyed again(please) my shedding has slowed somewhat, still heavy in the morning and on my moon cycle. I have a very small amount of regrowth.
any advice would be appreciated
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Does anyone have sensitivity on their head when wearing a cap or wig? I wore a cap for a bit and now my head is aching and I'm concerned that I won't be able to ice cap anymore!!??
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I had sensitivity!
It felt like a sunburn. I think that's nerve pain.
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Sarahrae,
I cut and colored my hair with foil highlights at 16 weeks pfc. My hair had stopped shedding around 13 weeks pfc, but I waited an extra week or so just to be in the safe side. My stylist used a Davines peroxide based product from Italy. She was careful combing it out and said only one hair came out in her comb. Yay! It felt soo awesome to look in the mirror and see ME again! Just to get the blonde color back and trim off the worst of the troll hair made such a huge difference!
For those feeing a little down about your post-capping results - that's normal! I can't say I was thrilled with the way my thin hair looked during the first 6 months PFC, and it was kind of depressingg at first, but hang in there ladies, this too will pass! Once your hair starts growing it takes off quickly!
Big hugs to all 😊
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kechla, I am doing penguin caps now and followed BB's procedure exactly. It is easier with 2 coolers. My husband got them for $25 each at Home Depot. Uses one up and then goes to other one. Not much room to manueuver in my "stall". Slabs are better than pellets. If you haven't ordered yet, be sure to add the extra band, unless you have thin hair or small head (I have neither). It really helps keep nape, sides and forehead area hair covered. I am at day 14 today and I am losing hair, but not on my head at all. I have even pulled on it! Tomorrow is my next infusion. It is overwhelming at first but you do get a rhythm to it once you do it. And so worth it to keep your hair
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I need a recomendation on eye lashes products. I realized I don't have too many eyelashes left
I use Joseph's Brown gel for my eyebrows and eyelashes. As instruction says to continue to use 60 days pfc. So I have been using it religiously during chemo and now, after pfc. My eyebrows did not come out completely but thinned a lot and had gaps so I use powder for them to look normal. It seems that past few days they started to grow, not enough yet but I believe I am getting there.Plus I started to get some hair underarm..one side mostly for now..lol. That's something I didn't miss at all.lol.back to shaving.I read a lot of people use latise products.
Should I purchase it? Does it help eyelashes to grow? Where is best place to buy it?( I noticed it is on Groupon now) . is it Ok to use with Joseph's Brown gel? I don't want to stop JB and continue up to 60 days pfc. What do I use to make my lashes back? Also until they grow what fake eyelashes should I use and how? I have very allergic eyelids and afraid of allergic reaction. For now I get away with just eye pencil But I have a bday party to attend so wondering if I shouod try fake once..
Thank you.
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viktoryak - I used Latisse on my eyebrows throughout chemo and continued until now, and they seem to be in the same shape as yours. My oncologist did not allow me to use Latisse on my eye lashes until after chemo, so I started right after, and I'm in week 7 post chemo and one eye looks very good, the other I have few lashes left!! Bottom lashes all gone. I use Latisse nightly and it's by prescription, and the pharmacy I get it at charges $161 for the kit. Latisse is not recommended for ppl with blue or green eyes, and I've notice it's made my eyelids a little darker. I can't stand looking at myself in the mirror anymore. Good thing I'm on leave from work and spend my days hiding at home other than going to the dr.
I think you can get eyelash extensions. Something you may want to look into
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