Cold Caps Users Past and Present, to Save Hair
Comments
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Hi everyone, Still just off the ledge:-) It's Day 16 -- no hair loss -- but haven't lost it yet everywhere else either .... most seem to say they lose a lot Day 14 with TC ...so still in the waiting game. I keep telling myself... you are going to be fine. So many women before you felt the same way and had success. Still anxious! I did have a wonderful Thanksgiving with my family -- hope everyone else did too!
I am having scalp peel & lots of itching... its mostly in my part and around the hairline on my forehead -- so thinking it has a lot to do with freezing my head. Do you think I should put gauze on top of my head for my next treatment? At the least I will part my hair on the opposite side for the caps. Tx#2 is this Thursday... already in "get ready" mode...
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Hi Lmflynn - I think if you've made it to Day 16 and no hair loss you are doing GREAT. If you had not done the caps I think you would start to notice some clumps coming out if you touched your hair. I would not expect to lose hair everywhere. I really only lost my hair in one place - down there
. The hair under my arms and legs had to be shaved and then they stopped growing back but they never fell out.Hair on my arms never fell out at all.As far as what to do next time, I never used gauze but I definitely recommend switching your part in order to expose the least amount of skin possible.
You are gonna do great! You're almost halfway done already.
Ditah
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Hi lmflynn, I had lots of peeling between my first/second chemos, and itching too. The drying effects of chemo are pretty immediate, but once I had my second chemo and the first hairwash after that, I noticed the flaking and itching went away. I wondered if it was that top layer of skin that was shedding which normally also would include hair? The first hair I lost was down south and it was pretty dramatic. I was just glad my head wasn't doing the same thing
If you feel any burning with the caps it is a sign of frostbite; you should stop and apply a small patch of gauze to that spot. I never needed to do this but I know a few other folks did. Every scalp is different.
Please step back from the ledge! Frank's rule is that if you make it do day 21 with your hair, it is working and you won't lose your hair (you'll probably shed some, but you won't lose your hair). Just keep hydrating, exercising, treating your scalp as gently as possible -- that hair is trying to hang on!!! -- and focus on relaxing as much as you can.
Besides worrying about your hair ;-), how are you feeling? I hope you are having minimal SEs!
Best,
Susan
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Ditah and Susan -- thanks so much for trying to keep me off the ledge. I'm at Day 18 and still no hair loss. It seems my hair has stopped growing -- but I will have to shave my underarms again -- I have not lost "down there" yet either which is why I think I'm still anxious -- although it is shedding. My head is barely shedding -- no more than without chemo -- especially since I barely comb it -- but thick scalinng and itching. Sorry to be so graphic ... but the waiting game it hard. Again, I keep telling myself that many many women have been successful and experienced much that I am.
Susan - thanks for asking about side effects - I would say I had very few except for fatigue. A racing heart one day, really red chest and face right after chemo, some stomach issues, nose bleed, low WBC but no Nuepogen or Nuelasta needed....but all in all I consider myself lucky. It wasn't too bad. My sister who I say "breezed" through chemo last year told me I was doing better than she did -- she was one of my helpers -- and upset her Onco told her the caps won't work! My prayer through all this has been to get through chemo like her - with hair! I think the 87% of normal you use has been my experience.
Girls -- should I be worried? Or should I just take a deep breath and get ready for Tx#2 on Thursday? I'm high energy anyway and the anxiety is hard!
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Hello ladied,
One week post my second treatment and and 30 days since I started chemo noticed shedding but nothing major, I guess thats good news. The shedding is making me nervous but since you all say that this is normal I feel better
A lot of you mentioned hair regrowth products, can I use it during chemo or after?
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lmflynn
I had a lot of scaling, flaking, and itching through the first few chemos. It has finally gone away for the most part. I'm through 5 of 6 treatments.
Take a deep breath and try not to obsess. Although, I still obsess this far out, ha. Just get to that 2nd treatment with hair and you should be fine.
I also was using the hair down under as my measure, but found that it comes out later. I still have some, mostly gone, but not all. All you can do is hang in there, treat your hair gently and get to #2 without it coming out in clumps. You are almost there!
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Michon -- thank you! I am obsessive -- my sisters joke I have OCD and I think I do in a small way -- so nothing like my hair to obsess on right now!! How are you feeling? Know you recently had #5 and some neuropathy. Hope you are doing well with the SEs.
It is so helpful to hear from those of you that are through or toward the end! I can't tell you how much this board means to me and has helped me. I do feel like a trailblazer with the PCCs. And hoping to help others that come after me.
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I am extremely interested in finding out what all you did to save your hair. I have surgery in 2 weeks then wait 4 or 5 weeks before starting Chemo so I have some time to figure all of this out. I have really long, thick hair so I don't know if that matters. Please let me know anything you found out that might help me keep EVERYTHING!!!
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asimmons ~ Here is the website for Penguin Cold Caps. And I know when I was in your position I read the entire string on this thread -- soooo very helpful! You'll need to know your type of chemotherapy and length. I filled out the form and sent to PCC and they called me that day. Also, sure many others will respond.
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asimmons welcome!
We are all saving our hair with the cold caps. Check out the site, read these discussion boards and see if it's for you.
The basics: You wear a below freezing cap on your head the day of chemo, changing them every half hour. Depending on where you live, the caps are either available in a freezer at your hospital or you need to keep them yourself and put them on dry ice for chemo day. You'll need a helper to put the caps on, best if you have 2 people. Then throughout, you have to handle your hair delicately. Washing once or twice a week with non-sulfate shampoo, no hot hair drying, etc...
Check out the site and ask us any questions you think of. It's totally worth it to me. I'm at #5 of 6 chemos and still have my hair.
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HI, I am new to this site, and I am starting chemo 12/2, and am so interested in the cold caps. How long did it take to get them? Are you on your own, or did your cancer centers/hospitals help? and if you don't mind, the cost, and what you need, I keep trying to go back over the 48 pages, but I"m missing info on that. Thanks for any help you can give!!! This is amazing news!
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msjag~ I am not the expert on this site -- there are many that have much more experience --I have my second TC treatment on 12/2. For the Penguin Cold Caps, if you are interested go to their website and contact ASAP.
You are pretty much on your own unless you are fortunate enough to be at a cancer center that supports (very few in the US) but my cancer center (in Houston, TX) was open to letting me use the caps and their set-up is nice b/c they have private infusion rooms. You'll need a helper or 2 and they need to be committed.
You'll need two or three 60 quart coolers, an infared thermometer that goes to -45C, a place to get dry ice the night before -- PCC will help you with this and will have a list. You are definitely pushing it with time to get the caps. You rent them for the time of chemo - you need to pay for shipping inside the US. For me in the end it will be probably $1500 for the supplies and renting through my treatment. It is a lot and one of the reasons the Rapunzel Project (they have a website) is trying to get cancer centers freezers and higher awareness. It would be a lot easier if the caps were there at the right temperature.
It may seem like a lot to get done by Thursday -- good luck and please ask any questions!!
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Thanks Lm....I'm sure its too late for me, but its good info to have to pass on to other people who may be faced with chemo. Hope this becomes an option for people at all hospitals/cancer centers,
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msjag:
It's never too late! I put my chemo off by a week or more until I could get the caps and stuff together. You are in control of your treatment. I wanted to make it through a Kid Rock concert and then have enough time to get coolers, the caps and everything in place. Some women have taken a vacation before starting chemo. You are in control!
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Michon~ Well said! And I second... it's never too late (I got three opinions and 4 weeks before settling on the place and oncologist)... And while doing this found out that all trials give you 84 days from definitive surgery.... and studies have been done that show no difference in outcome 12 weeks post definitive surgery....you have time if you want it!
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msjag: It's not too late! You can delay your chemo -- to get second opinions, to get your life in order, and/or in order to arrange for the Penguin Cold Caps. Remember, it took years for your cancer to grow, and another week invested in preparing for the best possible outcome and experience will be well worth it! The extra week won't make a difference in your cancer outcome, but it will make every difference in your chemo experience, your ability to quickly detox the chemo, and in your re-entry to the world post-chemo. Preserving your hair is not a matter of vanity. I always tell people, this is a battle about living, not about "not-dying." YOU are worth it! I hope you can contact Frank and the PCC team right away. Tell them we sent you.
Best,
Susan
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zlota~ How are you doing? Know that you are into your second treatment. Also -- didn't look like anyone answered your question on the haircare products... I bought the Sea Chi leave in conditioner but then thought maybe shouldn't use til after the chemo.. Anyone have any suggestions or thoughts on using during chemo?
On another note, met with my oncologist today. She actually kissed my cheek... and said wow you have a lot of hair and I stand corrected.... Trying to talk her into getting a freezer... of course, she said -- you still have a long way to go... don't be disappointed.... but we'll see. She remembers the caps in England when she was in training.. and she said they used to drip b/c they were actual ice I guess... and now I understand why she thought I'd be miserable... the PCCs have come a long way!!! Day 19 -- a little shedding -- of course obsessed... but hopefully all stays well!!!!
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I so wish I would have tried the Cold caps! I asked my Onc and she said that she has never heard of them!? Now I have the long months of waiting for my hair to grow back...which to me is worse than the chemo and surgeries.
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poodleluvbug~
I wish you could have used the Cold Caps also, but I am inspired by you as you went through the process...
Hopefully the Penguin Cold Caps will be available to all that want them in hospitals etc. in the future.
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hi poodleluvbug: Most oncs haven't heard of PCCs, or else have heard about a version of cold cap therapy from about 20 years ago which was basically a shower cap filled with ice which didn't work well. Gave the current version a very bad reputation, and sometimes the struggle is even tougher with oncs who think they've heard of PCCs but really heard of the old style.
But now you've found them and there's a potential upside for you: cold stimulates hair growth, so you could still use a cap out of the freezer once/day for an hour and your hair will grow back faster. (If word of this gets out to bald physicians and bankers, trust me, this'll take off in no time!) This is a new application, even less-well-known than the existence of the caps. Any kind of cold will stimulate your hair growth, though.
The most important thing is that you're beating your cancer and in charge of your present and future. (You are radiant in your picture!)
Susan
ps I'm with Ang7: I'm dedicated to spreading the word about this option for people going through chemo so that every oncologist office and cancer center has these available.
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Hi All: Just wanted to report that I have Chemo 3 of 4 yesterday, so will have 14 PCC caps available after Dec 22 if anyone needs them in the Northwest after that (I live in Oregon and they were expensive to ship from Michigan).
Also, I'm the one who was having trouble w/ a lot of shedding and some small clumps just after Chemo 2; it has continued but not quite as bad and I think I'll make it w/o wearing a wig. I have lost a lot of hair, though, esp. on the sides and back, but it seems to be all the underneath layers. Probably 1/3 or more of my hair in all, which is a bummer, but my husband keeps saying, "You're not supposed to have ANY hair by now", and he's right, of course. Anyway, I followed all the rules; all I can figure is my hair was so thick to start out with that it didn't get cold enough underneath. I have a big head also so I don't think the coverage in back was very good. Don't want to worry you ladies going through it too much, if your hair is not ultra thick you should do fine based on what everyone else has said. Lucky
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Hi everyone, Day 20.... next chemotherapy tomorrow. Lucky60 -- thanks for sharing .. I have the opposite problem -- my hair is so thin that I think I freezer-ed my scalp....there is a thick scaly line done my part and at the crown of my head.... this process (cancer and mx and surgery and chemo -- and the unknown with the success of the caps) is so stressful I think for everyone. Of course, I'm scared -- With chemo #2 looming tomorrow and with different helpers .. you get anxious. So far I really have had minimal shedding -- I do think after #2 is when most people see the most.... Ladies -- is that right??
Wish me luck, minimal side effects and most of all HAIR!! I couldn't handle the stress without you all!!! Lisa
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Lmflynn: I think with thin hair you'll do fine (other than some dandruff, probably!). By Day 18 or so I was already having substantial shedding, esp around my ears. It just got a little worse through about Day 24. I was definitely ready to jump off the cliff then! Still shedding daily, but remember you have about 110,000 hairs, so there's a lot to lose and still not be very noticeable. It sounds like you're doing great if you have minimal shedding already. Lucky
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Lucky60 - your are right about the effects of having thick hair. I did 4 TC @ 3 weeks during July - Sept. Most of my shredding began at Day 17. I had thinning, mostly along sides and back (only left side). I was little dismayed at being able to see my scalp under the top layer of hair -- but at least the bald spot was covered! About 6 weeks post chemo I started using the Sea-Chi organic hair conditioner and growth and within a week I noticed that my bald spot had changed color -- hair was coming in. I am almost 3 months PFC (I hope that means post final chemo -- LOL), and my underlayer is filling in everywhere.
Colleen
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Lmflynn, I had some "feezer burn" after my first TX. After that I made sure that the inside of the caps were wiped off so that they were pretty much dry when they went on my head. After that, no more peeling scalp. I also combed my hair straight back ( kind of like Shirley's video) so that my hair covered my part and the crown of my head.0
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Thanks everyone, so appreciate it. Will try combing my hair back and also going to bring some thin pieces of gauze for my helpers if it looks like you can see "skin" at the changes. I'll make sure they wipe them down everytime... my hair was "wet" last time after all the cap changes.
Newbride, also you helped me very much by explaining the "creeping" feeling.. I have that a lot and I think it may be where these thick scaby scales are coming off or sluffing or whatever,, the great news is that they come off without hair attached!!! And I'm petrified to try to pick them off so just leaving them alone... maybe they'll be like a caulus and protect me this time
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I just recieved the caps yesterday--may be starting next week--I have the TCH Tx--only received 8 caps----ice recomendation? I have them in the freezer now--The nerves are here--now I get what you girls mean--so much hope though!! Size of cooler too please? 1 or 2 coolers ? going shopping for the rest of everything this weekend--ready to get the ball rolling--(I Guess!)
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sashasz3 - i also live in nj-westfield- I'm on TCH every 3 weeks, I'm little over 1 week post my 2nd treatment- still have hair. I went to walmart and got 2 big coolers, I'm not sure about the size but but get something on wheels cause dry ice plus caps=very heavy lol. I have 14 caps each cooler holds 7. Goole dry ice in your area and there are companies that sell them. I got mine from work ( work for pharma company) and kept it in the garage over night. I don't know how long your trip to hospital is but drive with windows open a little when you have dry ice in the back of the car especially if you have suv type car, dry ice can give you shortness of breath. You might be able to just get 1 big cooler and one little one if you only have 8 caps.
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I wonder why I have only 8 caps? I know the first tx if usually extra long--due to how slow they start--I go to voorhees for my tx about 45 minutes from my house---I guess I'll need to rotoate them when I start--knowing that I will not achieve the correct temp for the second round usuage--
How is your hair holding up?? Any tips you can let me in on?
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sashasz3
I heard they are only sending out 8 caps now and you need to rotate. I have 14 caps, but have used 10 the last 2 times with rotation and it works as long as you have enough dry ice.
I use two 50 quart coolers and 60 pounds of dry ice pellets. You probably should use more since you'll be re-using all of them. More is better than not enough. Maybe 80 pounds? Definitely rotate them around so they get cold enough again. The bottom seem to be the coldest if you have them stacked. Make sure the ice is around all sides of the containers. Bottom, sides, top. Get an ice scoop or something to help you move the ice around. After use, we marked them with a piece of blue painters tape. It doesn't stick to the outside of the box, so place it inside. Also, mark 1, 2, 3,... on the tape so you can keep track of which ones have been back in the ice the longest. Your helper(s) will be very busy!
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