Cold Caps Users Past and Present, to Save Hair
Comments
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Hortense - thanks so much as always for the info. No apologies needed at all! I'm grateful for all your help and for the support of all the cappers here.
Hang in there everybody
Kay
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Hi ladies. Day 8 post 1st A/C treatment. No shedding at all... yet. I was wondering if anyone uses a cap at night on their hair? I do have the silk pillowcases, but my hair is pretty long. I bought a silk cap that ties in the ethnic hair section at Target, but was looking for any other suggestions. Thanks. Keep on fightin strong!
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Deb, sorry to hear about your diagnosis. I live in the western suburbs of Philadelphia, and was treated at the Hospital of the University of Pennsylvania. We're practically neighbors : ). I will try to answer some of your questions and I'm sure some of the other ladies on this board will chime in as well. Using the caps with dry ice is pretty labor intensive. You will not be able to do it yourself. You will need at least one helper on chemo days to change the caps during your infusion and for about 4 hours after. I had my dry ice delivered (found the supplier through an internet search). It cost a little extra for the delivery but was worth it. You will need a new supply of ice for each treatment. Some women have had success getting a discount on the ice when they explained why it was being used. The caps are kept in your home freezer between treatments and put in wheeled coolers in the dry ice for use on infusion days. You can purchase the coolers on Amazon,Walmart, Target etc. Only you can decide if the using the caps will be worth it. A lot depends on which chemo drugs you will receive. Please keep asking questions and we'll try to help.
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Hi girls
Day 18 and more hair lose, I think by next week all will be gone. My question is if all hair goes do you guys still recommend capping? With the hope it will grow back quicker. I'm off on Monday for a wig, I had hoped that I would not need it, but I quess I have no choice. Just hope and pray that it grows back quickly heat curly straight whatever so long as it grows back quickly :-D
Thanks all you girls you have no idea how much it helped having you girls to share with. Friends and family are great but they do not get the emotional turmoil this process has on us girls.
xxx
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DebDylan, Here is a link to makingway's website full of helpful tips for dry ice etc.: http://penguincoldcap.wix.com/help
My facility accepted a donated freezer from www.rapunzelproject.org , a non profit founded by a former cold cap user, created to donate the special freezers for cold cappers.
Dry ice or freezer method, you will need at least one helper. It is a lot to orchestrate, but once you get it all figured out, it is pretty smooth. I found my frieinds and family were more than happy to help me out on chemo days. I had more helpers volunteer than I needed. I am sure that you will too, just ask.
Keeping my hair certainly helped me deal with the whole ordeal. I am so glad I used cold caps. Good Luck.
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Deb, my surgeon was Dr. Czerniecki and my radiologist is Dr. Freedman. I am very comfortable with both of them. I had my chemo treatments at Penn's Valley Forge facility which was more convenient for me, probably not so much for you. I think you will be very happy with Penn- it has a NCI designation and is one of the best. We're lucky to live in an area with top notch health care facilities- something I didn't appreciate until I needed it.
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fab....I am so sorry to hear that the caps are not being successful. I am not familiar with your drug regimen so I can not say if that is a contributing cause. The protocal recommends using the cold caps between treatments for an hour or two every couple of days. I do not know how you would be able to withstand the cold if you have little hair to protect your scalp. Maybe others have more experience.
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DebDylan,
I'm not sure how far south you are- I am in central jersey and get my dry ice from Artic Ice Creamery in Ewing (about 15 minutes away for me). I live in Hamilton and am being treated at the Cancer Institute of NJ on the Robert Wood Johnson Hamilton hosiptal campus. They have been great if you wanted a second opinion.
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Deb, you have a lot of decisions ahead of you and you need to have faith in your doctors recommendations. Get as many opinions as you need to make informed decisions. Take your time and put together a medical team you are comfortable with. Don't let anyone rush you into anything. You have plenty of time to decide about the cold caps.
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Hi Deb, I just read your post. I am so sorry. I just want to weigh in that I had the same fears when I was first diagnosed. I know we should dwell most on getting rid of the cancer but physical appearance is important as well - and for me especially since I had to hide my cancer or we would lose funding and clients, I have a lot of people dependent on me to be strong and let those who give us money know that we will get everything done on time.
So, here is what I did. Internally I feel different but externally I do nto look any different, no one knows what I have been through.
1. Most important- cold caps- my avatar pic is taken two months after finishing chemo, I got some thin spots but kept most of my hair. i had TCH which is easiest on the hair, that helped. and my wonderful cap helpers were so happy to have helped me. It is so much more meaningful than sending flowers!
2. Iced fingernails and toenails during infusion with bags of peas- no changes or losses.
3. Had skin-sparing mastectomy with immediate tissue expander placement. permanent implant exchange before I started radiation. Still have cleavage!
I did not know ANY of this was possible nine months ago when I was first diagnosed and I learned it all from the girls on this site. I am eternally grateful.
And I am still "Me". You can do this! it is worth the research and the effort. Dont let it all overwhelm you, please- we are all here to help and answer questions.
BIG hugs0 -
Hi ladies. Day 8 post 1st A/C treatment. No shedding at all... yet. I was wondering if anyone uses a cap at night on their hair? I do have the silk pillowcases, but my hair is pretty long. I bought a silk cap that ties in the ethnic hair section at Target, but was looking for any other suggestions. Thanks. Keep on fightin strong!
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Deb,
If you decide to go ahead, I have my last chemo July 31, and would be happy to share my supplies with you. I have the 2 coolers, thermometer, gloves, and electric blanket. Think about it- might be one thing off your plate.0 -
Curly...here is what I found works best for shampooing. I bought one of those plastic bottles that hardressers use to apply color, with the pointed nozzle on it. I mix in a good amount of shampoo and a bit of water and shake it up. It seems to me like using the bottle to apply it I can really get into all the areas, lift hair up with the tip and get to the scalp. Then there's a lot of foamy shampoo mixture at the end that I just squeeze on the top and pat it around. After I started this, I felt like my hair was cleaner. As I've gained months pfc, I have lessened the water. I mostly use the conditioner full strentgh, but put it in my palm and allpy to just the shaft/ends and then rinse. Hope this helps!
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I wanted to upload a more recent picture that shows my mini pony tail! Much skinnier these days but hanging in there. I had my 4th trim today and got 1" off and it feels much better. The stylist said she can tell it is getting thicker - glad she thinks so LOL! You can also see that the part by my ear was once my bangs, so my hair has grown all along and at the nape of the neck lots of shorter growth. Hang in there, cappers!
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anniej76,
I wouldn't advise sleeping in a cap, it might hold in too much heat. Some of the ladies wore their hair in a very loose braid.
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Hope your hair looks beautiful. I wish mine was as soft and conditioned. Mine started getting curly a year or so ago for some odd reason and is still dry and frizzy most of the time. I feel that it is filling in but not really gaining much length. I trimmed it twice once in Feb, and in March. Going for the shaping layer haircut in August. Hope it makes it look fuller and still get rid of some of the chemo dry hair.
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hope you look so GREAT!
tmb, I LOVE the Pay it Forward attitude. I wish we had a better way to share supplies with new cappers.0 -
hope, you look amazing! Congrats! And what a great idea re: shampoo - thanks! I will try it.
schoolmom - i hope the haircut helps, but your avatar still looks good to me.
curly0 -
Hi girls
All hair gone took a razor to tge remain bits. The question I have is if I have no hair is it worth cold capping during chemo with the hope that it will grow quicker?
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Hope - awesome! You look great!
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fab1 - I'm sorry!!! The theory would be that that would be the case. However, that would be based on thinking the caps are keeping the chemo from getting to your follicles b/c of the decreased blood flow. If you lost all of your hair, it sounds to me like your regimen is really tough on the hair and is getting through to the follicles. I'm not sure if the caps would be beneficial or not. Are you getting them free b/c of being in Europe? (I've heard that is often the case.) If so, I personally would probably try to continue them, "just in case", knowing there was no promise of growing hair back faster. However, if I had to pay for them, I would not do that once I had lost all of my hair. YMMV.
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Hi dancetrance
Thanks for response, it is free here in UK, U think I will continue with it as a test case if I can bear the cold on scalp. I'm now trying to rock the bald look. I won't post a picture as it may freak you girls out. I will continue to pray for all you other girls to have better success.
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Oh fab I am so sorry. My heart goes out to you.
That is the thought but boy are they a hassle and expensive, if not free to you, so I would weigh my options.
I know that I did have some new growth even during chemo, as did some of the girls on this board. Ihad lost some patches where we didnt realize the caps had a round seam thingie for the first couple of infusions, and so I was not kneading the cold gel over those spots as I did in the next four rounds. I had TCH which is gentler than your regimen, but still makes everyone lose thier hair if not capping.
I also lost hair in front of my ears and behind them, where the caps didnt reach.
By the time I was done those think spots were filled back in with short stubbly hair and now, five months PFC those hairs are about an inch and a half long. so I think, at least for me, it did come back quicker thanks to capping. I am still on herceptin which slows the growth so it could have been faster, it doesnt look like you will get that.
Good luck with that decision, how many more rounds do you have?0 -
Hi sciencegirl
I still have 5 more sessions, so I will try to cap as I hope it will mean once treatment done hair will grow back quicker. I will keep everyone posted.
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fab1 - I'm so very sorry. How disappointing. But I am so impressed with your positive attitude; it speaks volumes about who you are. And how brave you are to continue with caps!! I would suggest you try one of those thin caps actors use under wigs. It would protect your skin without blocking the cold. Or maybe line the caps wtih a thin layer of cheesecloth. And I will be very interested to hear how regrowth goes for you.
My hair has done its shed for this round and I'm very thin indeed. I'm not sure there will be anything left after my next - last - round. I signed up for Look Good Feel Better to learn how to enhance my thinning eyebrows and hopefully to get some ideas on how to deal with what's left of my hair; maybe scarf tying or something.
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Hi shipgirl
Thank you for your kind words, I was going to use a thin cotton scull cap. Do you think that will protect skin? And di you think I should wet it/
we are all amazing women and so strong to try and maintain control during these testing times. I will pray your shredding stops. So glad you only have one more round. Your nearing the finishing line. Thanks for support and I would love to keep in touch with you all during our road to full recovery. X
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No, don't wet it. You don't want to risk frostbite. But the skullcap sounds like a good idea. You want to get the cold to your scalp but protect the skin from the cap.
Thanks for your warm thoughts. I am so happy to have had the caps through this journey and it will be a great day when I can pack them up and send them back!!
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anniej76 - I did use a satin cap and also a satin pillow. I actually had bought two satin caps. One like the one you described, but I couldn't get it to stay on - I'm a klutz. The other one was like a satin lined shower cap and easy to wear. Later on in my treatment I stopped using the cap and just carefully brushed my long hair up and back on the satin pillow with my hands, away from my face, before going to sleep. I had chemo last summer, but we have a/c and my room was comfortably cool so my head never got hot from using the cap.
Fab1 - You are impressive! I am so sorry the caps didn't work for you. You most certainly gave them a valiant try. We have all heard that using them will help hair to grow back more quickly, but I don't think any of us know that for sure. You may be carving a new trail if you do continue.
Deb - Success in keeping your hair may depend on which chemo you are given. Taxotere/Cytoxan has a pretty good record with cold caps. You may have plenty of time to arrange for cold caps helpers, etc. as you may have a healing period after surgery. I was given a month, but, I only had a lumpectomy. I also had about a six week break after chemo ended before radiation began. Radiation was far easier than chemo. Ten minutes lying on a table with a few very short radiation blasts from different directions every day for six weeks, easy peasy.
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Thanks Hortense. I'm still trying the silk cap. I have another question for you ladies: my hair skills are bare minimal, pony tails and buns are usually what I do with my long hair. What suggestions do you have on how to wear long hair during the day without stressing the frolics?
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hi Annie, I have long hair too and many days it looked awful to go to work since I wasnt brushing it (a no-no) or even combing it much between washes, which I did twice a week.
My trick was to loosely tie a silky scarf to use as a headband- with the broad part on top and the knot tied at the nape of my neck, ends hanging down my back.
I didnt want to use ponytail holders - too much pulling, and the stretchy headbands seemed too tight, too much rubbing.
That worked for me, I got a few scarves at thrift stores (and washed them well) since most stores these days have thicker ones, not those long thin silkies.Shipsgirl this could work for you too if your hair is mainly thin on top? My bangs got thin and short but there were still enough to stick out the front of the scarf. Also they sell bang extensions, I had thought about pasting those under one of my scarves! but they grew back really fast.
Also some girls do a very loose braid.
I would also sometimes very gently pull my hair back with a small claw clip on each side, to keep it out of my face. But I didnt put the clips near the scalp, just holding the hair back behind my ears- again near the nape of the neck.
I was just so glad to still have it to pull back.
Good luck!0
