Cold Caps Users Past and Present, to Save Hair
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I am going to need chemo after my surgery. They said I would lose my hair. This upsets me more than losing my breasts, strange, I know. These cold caps are giving me some hope that I might not have to lose it. How much do they cost? I am very interested in hearing more about them.
Thanks!
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Hello Shadow2356,
Iam a past penguin cold cap user and I felt the same as you. I can tell you that they did save my hair. If you read back on the previous pages you should get all the info that you need. All you have to do is go to the Penguin Cold Cap website and you can order them there. If you decide to try them and want to PM me feel free. Good Luck--Geri
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Hi there - I am in the UK - I am using cold caps and it is working well. I have certainly thinned out a bit, but still have a lot of hair and it looks ok.
Good luck!!
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This is so encouraging to me. I am really freaked about losing my hair. I am going to try this!!!!
Thanks
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Bump
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bump
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Hello Virginia,
Glad to see your still here!! How are you doing? I hope all is well!
Take Care--Geri
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I am very well thanks - hope you are too. I still have lots of hair (on my head) and am pretty pleased that I have done the cold cap thing. Fingers crossed it continues well.
Aside from hair, here is a useful thing for anyone with wound infections or areas where you need to grow new skin:
Honey dressings. In the UK they are made by Activon Tulle, but another firm makes them in the USA. These dressings are fantastic and really saved the day for me. Yay for the bees!!
goo luck all -
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Hey Virginia,
Iam glad you have lots of hair!! Yeah!!! Thanks for reminding me about the honey!! My brother (he passed away last year) had MS for 30 years. He was totally disabled. (Love you MIke) the last few years he had very bad bed sores and we put honey on them and they started to heal. I heard that about honey a long time ago. Also this little old lady that I met at Curves (an excercise place) was a bee keeper and she put honey on everything. Even when she had an eye infection she would put a little on the outside of her eye and it would clear it up. Hey --maybe I'll put some on my foob!! Thanks Again--Geri
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Hello ladies,
Just wanted to let you know I am doing well with using the Cold Caps. I just finished the 2nd round of Alimta last week, using the caps again. Most of the staff is curious and supportive in my use of the caps. Though Alimta doesn't usually cause Grade 4 alopecia, it may cause Gr 1-2 in 25% according to a study I read. Since this is my fifth chemo, and I will likely have to switch to more hair toxic chemo, I am doing all I can to keep the hair I have with the PCC use, to minimize the cumulative effect of chemos. Frank has been so helpful in getting me started with info on hair growth and the PCC. Thank you Geri and Candy for your advice and encouragement last month in getting me on track with the use of the caps. Hope all is well. Beth
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Great job Beth!! I had my 3rd FEC chemo today, and met a lovely girl names Sharon who was there for her 1st treatment, and fist use of the copld caps, so ti was neat as we had a good old chat, and her husband was there and we had a nice day and I was really happy to be able to give a bit of support to a chemo-newbie.
My hair is till there, I haven't lost hardly any this last week, which is actually better than before. So - good luck and stick with it !!!
Geri - aren't bees fantastic little pals? There is a thread today about a new trial on bee venom targeted on cancer cells - it is in active topics, have a look. Early days but yet again - our little friends are doing a good thing for us.
I had grumbly boobs this week so put a little tiny bit of the bee dressing on and hey - guess, what, happy boobs!!!
Rather a fun coincidence, the area in London where I live is called Battersea (it is right on the river and the vikings kived here thousands of years ago) and out Borough sybol is none other than the bee! In Vitorian times, this was a farming areea and much lavender was grown here and lots og hives of bees.
So, bees seem symbolic to me of nice things in my life.
Live long and prosper girls! xxxxxxx
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Beth-I've been thinking about you and have been wanting to call you.. I have no excuse except my DD has me so busy these days! Plus Iam getting my energy back since my last chemo and I see all the things around the house that I have let go since April! So I have been having a garage sale and cleaning my house like crazy!! Hope your doing good. Iam glad to hear your doing well with the cold caps!! It get's easier to use them doesn't it! I will be calling soon, maybe tonight. Keep in touch! Take Care-Geri (Geralyn)
Virginia--Speaking a bee venom----A long time ago they said that it would help patients with MS. A lady got stung with bees (in a controlled enviroment) and had improvment. (like 200 stings!) My brother was chicken to get stung so much LOL!! But years later we started giving him bee venom by mouth. It came in a jar just like honey. He actually was doing a little better. He could almost talk again. My brother was so bad though (he had a trach, feeding tube, totally paralyzed) He lost everything except for his beautiful smile and his mind. I think he got really sick and ended up in the hospital for a few months. So we quit giving it to him. But somebody who wasn't that bad I bet it would help.
Battersea sounds really cool. I bet there is alot of interesting history there. And I love lavender!!
Not to change the subject but how are you doing! You sound great. And Iam glad that you are keeping your hair. Isn't it wonderful!! Thanks for keeping this thread alive. At least there are some woman who are trying the cold caps. Maybe the others will believe it works after more of us have sucess stories!!! I have a wedding tomorrow night and I can't wait to fix my hair!! Iam so thankful that I still have it! Take Care--Geralyn
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New to the board here but wanted to post to let everyone know about my experience so far using the Penguin Cold Caps. I had my first treatment of TC-H on 08/05/2009 and experienced very little hair loss. My treatments are three weeks apart. My second treatment did not go well and I was fairly ill afterward. I also experienced the heaviest amount of shedding after this treatment. The shedding seemed to come mostly from the nape of my neck where my hair is thickest. After my third treatment, I experienced much less shedding than after the second treatment. I have started using the caps during the week just straight out of my freezer. I do not put them on dry ice like on chemo day. This seems to stimulate my hair folicles and I believe helps reduce the amount of shedding. Since the caps are not so cold, they sort of feel like a "spa" treatment. I would say that so far I still have at least 90% of my hair. My husband says he can't tell it has thinned at all. I will have my 4th treatment this week. Overall, I would say that so far I am very pleased with my success. I will post again soon to advise if anything has changed. I had the pleasure of speaking with Frank, the inventor today. He is a wonderful man who calls us "his girls". He has given me valuable advice and I feel like he is interested in my success and is very willing to help me. Good luck to all!
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Hello Ashively1,
That is great to hear about your hair. Remember each treatment is it's own. I had a few screw ups on my 4th tx and was worried about loosing my hair after the 4th tx but I didn't but I shedded more than the first 3. So it is very important to get it right each time. Iam glad you are having success!!
That is also great you are putting the caps on in between. I talked to Frank about my hair shedding and he told me that I needed "Activation Stimulation" I said "What is that?" and he said to put the cold caps on straight out of the freezer for 20min and then 30 min and another 30 minutes whenever it fancied me. (I love how he talks!) He also said DO NOT put my follicles to sleep (dry ice-no) but that hair likes the cold and it stimulates the oxygen and blood supply to your scalp and will help it to grow. So it sounds like you are on the right track!!
Good Luck with the rest of your treatments and Take Care, Geralyn
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I am about to start chemotherapy in NYC and could use advice or assistance about cooling the caps during the sessions. I will be staying at hotels while traveling from out of town for treatment. many thanks.
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ladymd63,
Sorry you have to go thru chemo. Are you going to use the caps for sure? Have you ordered them yet? How long are you going to be in the hotel? You will have to keep the caps in a cooler while traveling and a freezer at home in between your tx. Before your tx you have to put them on dry ice to get them to the proper temp. (cold enough) While traveling home after tx I would think regular ice would be good enough after the dry ice is gone depending on how long you are traveling. As long as they are cold enough during your chemo and cold tranporting them. Let me know what you are doing. Good Luck--Geralyn
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Oct 1, 2009 09:50 am malaika wrote:
Hi all....
okay it is the day before I begin my third tx. I am losing my pubes!!!!! I tugged on a little portion of my head hair and it is still attached tightly. I'll post again on Saturday or sunday if something dramatic happens with my head hair..
Oct 4, 2009 12:19 pm malaika wrote:
Okay...so it is sunday. Day 15 after first treatment. So far I've had three treatments of taxol..one including carboplatin and no hair loss. I am still reserving judgement (thats the scientist in me) until later on. Why? well, so woman somewhere said that Frank (the caps inventor) told her that if she hadn't lost hair after 21 days she wouldn't. I'm still 7 days shy of that 21 days. I am assuming that he is basing his statment on something factual and am trusting that to be the truth for now.
Some hair did come out in the comb yesterday, but it didn't seem like an overnormal amount to me. Moreover, it didn't have follicles attached. I think I broke it off in the velcro attached to the caps and when i took my braids out, it came off. Still..it really wasn't that much at all. I lose far more than that when I comb my hair roughly on any given day. So. I'm still hopeful. I'll give another update in about a week. after the next treatment or if something dramatically devastating happens
A few seconds ago malaika wrote:
Day 22
Setbacks and success
Setback: So on the first day of treatment I got the pccs too cold. They froze to the point of burning my scalp in the front/top of my head. It was obvious that they were too cold on that day, and the burning became evident in the days thereafter. It was quite sore, and a scab formed. It eventually peeled and dandruff formed daily in the spot. I didn't say anything about it because it didn;t seem to affect my hair.
Well on the thursday before my 4th treatment, I noticed that long strands of hair were coming out of my head. I checked for follicles, and they were obviously attached to the strands. I wondered if I was getting the shedding other women talk about on the pcc threads elsewhere. Then, I checked that spot that had burned and noticed that it was devoid of hair. The entire area that had been burned was bald. Looking closely, I noticed light stubble in the area. So some of it broke off and some of it came out in that area. It is a small spot, and easy to cover because I haven't lost any hair anywhere else. My hair is fairly long and quite thick. And the hair next to the bald spot looked as wavy and shiny and thick as ever. So I chalk this up to overzealousness at the outset.
I caution all you ladies who decide to try this process...if you feel that you're burning your scalp (I had a perm phase in jr high school...it feels just like a perm application thats gone on too long) Be more mindful of getting the caps warmer before continuing. This is a problem I think because the caps get colder in the top generally and its easy to be impatient waiting for the things to warm up a bit.
Now the success:
As I mentioned before, my hair on thursday was every bit as thick and long as it was when i started the pcc treatment. I've heard women say that they lost their hair a month out in one night after their third or fourth treatment on the regimen that I'm on.
This hasn't happened to me. I'm 22 days out from the 1st treatment...I have not thinned at all. I guess my new goalpost will be on day 30. I'll let you know if things change for me. For now, I have to say that these caps work, and I find that they were worth the cost even though I don't think that I really needed more than 5 caps at a time. I keep reusing the same few caps and haven't had any problems getting them cooled down appropriately. I can say that they are worth it now because I found myself unexpectedly horrified when I lost that bit of hair in the top. Its a small area, and covers, but moving my hair away from it and looking at the white patch of scalp moved me in ways I can't describe here. I knew then that I wouldn't take the loss of my entire head of hair very well.
I'm also a bit concerned now that I might have a delayed loss of hair....I'm very much looking forward to ending this regime.
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Hi Malaika:
Thank you for posting an update. I start chemo (TCH) this Sat. and am talking to Frank about how many caps I will need. I have long hair and don't won't to lose it so I am willing to give this a go. I'm keeping my fingers crossed for you...it sounds like its working. Hope you are handling the treatments without too many side effects.
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Hello Maalaika and Sunshine,
Iam so glad that you are trying the cold caps. I used them in May and July and I kept 90% of my hair. Frank is so wonderful. He will help you's any way that he can.
Malaika--- I know how you feel waiting and wondering if your hair is going to fall out of your head!!! Thank the good Lord that it doesn't!! Every morning I would look at my pillow afraid to see a clump of hair and I DIDN'T!! I would say "Thank you Lord for letting me keep my hair!" Every morning!! I counted the days to get past the danger zone. I had 4tx of taxatere and cytoxin. My first three tx went smooth. The caps were the right temp and they where on right and tight. I had a little shedding for about a week but no clumps--just strands. My 4th tx went a litlle bumpy!! I didn't have enought dry ice. The caps were not cold enough when I was suppose to start chemo. I told the nurses "No way am I getting chemo without my cold caps on!!--especially my last tx!!, Iam not loosing my hair now!!" LOL !! My dh went and got more dry ice and then they were not evenly the right temp so I waited longer. Then everyone was growing impatient and I started--then they were to cold and did not fit right etc. The whole day seemed screwed up!! I went home in tears scared I screwed it all up. Well count down began again and I prayed. Well Iam now 2 months out and still have my hair. I did shed more than the first 3 tx but I am happy with my results and I have 90% of my hair. I remember before chemo my brush was always full of hair!! I never worried about it before! Now I baby my hair and am thankful for every strand!
The point is that each tx is it's own and to have good results you must do it right. To cold is not good either. That is why you must need the caps and bring them down to -35 and not colder . Plus if they are too cold you cannot fit them airtight on your head. I would take my cap out of the cooler 10 minutes before my time was up to change my cap--my dh would knead it and check that the temp was consistent thruout the cap and had it ready to change. So that when one came off the other one was ready to go right on.
Good Luck to both of you's and thanks for sharing your results!! Geralyn
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Hi Ladies, I just wanted to show my hair 7 1/2 weeks post chemo. It is growing very fast. I thank Frank and his cold caps everyday!
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I have no idea why it post two of every pic, but I cant get it to stop doing it...ergggg
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Hi Can-D:
Thanks for posting the photos. You have beautiful hair and I hope I can keep mine as well. I start chemo on Saturday and have ordered the caps from Frank. They should be here on Thursday. I think I will post my success or failure like Malaika has been. I am going to get 6 rounds of TCH every three weeks so we'll see how it goes. I'll so glad it worked for you.
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Can D, your hair is lovely. I didn't have that much at 7 MONTHS. My grew so slow and then started to wonder if the arimidex was causing it to be so slow.
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Update ... I've had 4 TC tx with #5 tomorrow (I'm scheduled for 6). Like malaika, I used caps that were too cold on the top during tx #4 and burned top of my scalp and my forehead hairline. Both areas peeled extensively. I also had substantial thinning after tx #4 and will have to cut my bob into a pixie.
I spoke to Frank yesterday and he recommended that I use the caps between tx cooled just by the home freezer (letting them warm up a bit first). I'm hoping that will stimulate regrowth. He also recommended that I not use caps that are colder than -28C and that even -25C is good.
Lastly, it's very important not to go beyond the 30 minutes between cap changes. Unfortunately, because of the difficulty in selecting a cap that is the proper temperature, we exceeded this a few times. I think that pulling the caps out of the coolers 10 minutes before it's time to replace the cap and kneading it to spread the gel to even out the temperature would help. It's very hard to get the appropriate temperature for the whole cap using the dry ice method. The burden on the helper is very great and I am so appreciative of my friend who helps me.
Can-D, thanks for posting your photos. I'm most impressed at how much hair you have at the nape of your neck. That's where I lost the most and why I need to cut it even shorter (I have straight hair and the longer part at my neck now looks very stringy). I have a larger than normal and head the caps just don't cool that area well for me. Frank provided some supplemental gel straps for me, but we were using them on the outside of the cap, whereas Frank said to put them under the cap at the nape of the neck. Perhaps, by making his suggested changes and using the caps between txs, I can begin to regrow lost hair even before I finish chemo.
Best wishes to all.
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Lori, I too lost hair in some spots. Around my ears went totally bald...white scalp. And also an area right at the top, where bangs would be, about the size of a half dollar...where I pushed a tissue too far up. However, my hair began to immediately regrow, and by time I was finished with chemo, these areas had at least a half inch of hair. So keep it up and hopefully, your hair will start to regrow immediately as well. Additionally, I too kept cutting my hair shorter because it looked stragely and thin due to the thinning. Take care, Candy
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Okay...I just had my first chemo of TCH (one down and five more to go!!). Frank informed me that I needed to put the caps on when they were minus 30 degrees centigrade. When we got to the hospital with $100.00 worth of dry ice the caps were not cold enough. We put them on the dry ice the night before but they would only get to minus 24-28 degrees centigrade. I was freaking out but what do you do at that point? I hope that it will still work. I do know that they were cold and I had a burning sensation on the top of my head as well...I started to wonder if I will get frost bite there...but I have no sensations in the spot today so I hope all will be well. The back sides of my head did not feel as cold as the top when changing the caps but they were still cold. I'm picturing myself having scraggly bits of long hair here and there because I've somehow screwed this process up...I hope I'm just being over anxious and worrying about nothing. I'm going to wear the caps out of the freezer for several days during the week.
I've now figured out that removing the caps from the plastic boxes and putting them in with the dry ice (keeping the caps covered in trash bags to protect them) will get them to the minus 30 degree centigrade or more temperature. I hope it's not too late for me!!! I'll keep everyone updated on my progress or failure.
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Hi,
Just last week I used the caps on my wife, and used a technique similar to what you are describing to get the caps cold enough (caps in 2-gallon ziploc bags underneath the dry ice, vs the trashbags that you mentioned). Biggest issue is that the caps got too cold: -38, -39 etc. Since they get less flexible at that temp, it is harder to mold them well to your head. So what I started doing is removing the caps from the cooler 10 minutes or so before application time, and kneading them with my bare hands until they got cold enough (oince or twice I sat on them!). Pretty cold on my hands, but obviously not nearly as cold as on my poor wife as I strapped them too my head.
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fa386,
Hello there--that is exactly the way my husband did it for me. We had to take the caps out 10 minutes before and knead them to bring them up to the right temp. The zip loc bags kept the caps safe and they cooled more consistent thru out the cap. The only difference is that when my husband strapped them to my head he just about choked me!! LOL !! Good Luck to you and your wife--Geralyn
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My friend who helps we with the caps also uses the 2-gallon zip lock bags directly on the dry ice and the caps can get too cold. My thought was always, better too cold than not cold enough, but following cycle #4, I had some ice burns on my scalp that peeled. Frank said that -28 or even -25 is OK. I'd prefer them to be in the -30 range however.
No Sunshine, the nape of my neck did not get cold enough even though the gel was cold enough, probably due to my larger than normal head. I lost a lot of hair in that area and have continued to thin there. After 4 full cycles, what's left is very stringy and I need to cut it extremely short. However, I still don't need to wear a wig and am grateful for the hair I've retained.
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Thanks Lori. I'm hoping I got enough coverage with the -25 to -28 range so that my hair won't completely fall out! I'm going to try the ziploc bag method like the others did next time (that is if I still have hair left). Hopefully with that and wearing the caps out of the freezer for a couple of times per week that will make it stay in place. Didn't I hear Frank say that if you still had hair after 21 days you would most likely keep your hair? I'll keep everyone updated on this. Take care...
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