Cold Caps Users Past and Present, to Save Hair
Comments
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Funny, that was meant to be "many updates" but "mane" will do. LOL!!!
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Micaito2~. I live in Houston and went to MD Anderson for a second opinion. I ended up having the chemo at The Methodist but MDA was completely open to me using the caps. My oncologist there was more positive that they would work than my other one..I just liked the set-up better at The Methodist.
Another thing I will add is take a moment to decide what and how you want your treatment. A week or even two should make no difference in your outcome...MD Anderson published an article last July I think that stated there was no difference as long as chemo was administered within 12 weeks of definitive surgery.
I know for me the time from diagnosis to treatment was crazy...surgery was done and then needed to figure out chemo....finding the penguin cold caps was a Godsend for me. I am very grateful for this group of women as well!0 -
Hi all -
Remember - your hair will grow back (not fast enough) but it will!
I hope this story makes you laugh. My hair started to 'shed' about 12 days after my first chemo. A few days went by, and I was really starting to notice how quickly it was starting to fall out. Well, I guess my teenage daughter noticed as well and said, "Mom, why don't you just let me buzz it all off? Then it's over and done with!" I hesitated because I really wasn't ready for that. "But, mom, think about it, isn't it better that I do it for you rather than dad? He'll do a really bad job." Well, she convinced me, so she sat me down and proceeded to buzz it all off. When she was done I said, "Thanks for helping me out honey, I really appreciate it." And my lovely daughter replied, "Oh, don't thank me. Just think of it as payback for all the really bad haircuts you gave me when I was a kid!" So here I was thinking we were sharing a moment together as mother and daughter. When in reality, my daughter had an other ideas! We both cracked up laughing, because, well, she was right, I did give her some pretty bad haircuts when she was little.
I wish you all the best and pray for NO MORE SNOW here in New England!
Patty0 -
Hi all,
To Motherof patient: My hospital treatment center does not charge for the use of cold caps, the company that makes them-PENQUIN COLD CAPS- charges a rental fee by the month. The hospital has a special freezer that cold caps users may use for free. There is a company that makes caps called Elasto Gel Caps, they sell the caps to you outright for $90.00 each. A woman named Toni used them and posted her success here, look back a few pages.
Any hospital or oncologist's office or treatment center can get a freezer for free from the Rapunzel Project. All this information may be found on Google. Look up Rapunzel Project and Penquin Cold Caps and Elato Gel Caps. Good luck.
I am doing fine, hope you all are too!!
Keep Positive!!
Nancy
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Dear mtri111, Thank you so much for your insights concerning hair loss. It seems that over time more and more hoops to keep your hair have been put up on the message board. We all spend too much time thinking about hair as it is. Some have added a really large amount of time in freezer temp caps, used one special shampoo found only on the internet when one just needs a really mild one, etc. I kept thinking about everything. For instance when I first started, I wore a satin night cap to protect my hair from friction on the pillow. Then I got to thinking that perhaps that warm head would cause more hair loss and switched to the satin pillow. If all heat is bad, wouldn't that mean that women who gets chemo in summer would lose more hair? Getting into a hot car, a walk on a warm day with the sun's heat on your head, even working out and getting hot would drive one crazy. I like the idea of just being nice and gentle with your hair, using gentle products and minimally processing hair. I think that a healthy diet, a bit of excercise and love of friends and family are just as important.
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Hi again,
I think I know why you are all experiencing so much shedding of hairs at nape of neck and sides. Most of you seem to have long hair and many have thick hair. It seems to me that those are the areas where the hair sticks out of the cap and doesn't gret the benefit of the iced cold cap, so of course those hairs fall out. I am experiencing(so far) very little shedding, and I think it is because my short hair fits completely all under the cap.
Question for Mtri111:
I received the generic latisse yesterday, but there are no real instructions on how to use. Where do I apply it? does it go on lashes directly or on edge of lid? How about on eyebrows? Haven't used it yet, because don't know how to do it. I don't want to cause any problems by doing it wrong. I remember you said to only use a drop. Please advise. Thanks.
Nancy
P. S. I will try to get to your survey tonight.
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Julia - Too funny, I have been thinking WAY too much about this darn hair. I had the same thoughts about pillows, women in Arizona versus Minnesota, women who get hot and sweaty in a workout, etc. I completely agree with you on just treating the hair gently. Today I washed my hair and tried not to look and feel for the shedding. Sort of worked...
We can get through these days, weeks, months....
Annie
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Hi to all
I've completed 5 TCH so far and have my hair. My advise to you all don't pull, don't count how many you loosing. I know its not easy but try to forget about the hair situation if you can.
When I first started the chemo and caps I was obssesed with hair and the idea of loosing it, today having 5 tratments behind me I still worry a little bit but not as much as in the begining you will get there too. My hair is thinner and they look tired I'm still shedding but I'm trying not to pay attention to how many I lost. We don't need any additional stress, the caps we'll work for us.
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I don't believe the length of hair has anything to do with your success. There was a picture on the Penguin website of a Hawaiian dancer and her hair looked terrific. If you think about it, the only place that needs to be cold is the scalp- the rest of your hair is dead anyway. The texture of your hair, the type of chemo and other factors are a lot more important. That's why Frank asks which drugs they are giving you right away to know if you have a chance of success. He also gives you a percent success rate. That must mean that there is a least some luck involved in whether this whole thing works at all.
I went out with a friend I had not seen in a long while last night and was suprised when she asked me if I was wearing a wig or if it was my own hair. It was my own hair. Others really can't see the thinning and grey roots as much as we do.
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Nancy (keeppositive) , re Latisse:
Here's how to use. Purchase a fine, good brush, what you would use to apply eyeliner. Unscrew the latisse bottle, and put ONE droplet of the solution into its cap. Dip the brush in to moisten, and apply at lashline... just like eyeliner. Easy!
I also would apply the rest of the droplet's-worth to eyebrows.
After 5/6th treatments, I experienced some lash and brow thinning, but i do believe the latisse help sustain the hairs, and certainly promotes quicker thickening afterwards. (Latisse... aka bimatoprost solution.. is awesome anyway. REALLY works!)
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Hi All,
I am 5 months PFC (4 TC @ 3 weeks). I just returned from my hairdresser for my second color job since PFC and my 4th haircut since starting chemo (yes I had a haircut during chemo). My hairdresser reports that I have 3" of new growth that is filling in and looking great. We are going to continue to keep my hair "collar length" for the next six months to let the new hair catch up with the old hair. The length is long enough for me to pull back into a ponytail.
Hair regrowth is individual, but my hair had a growth spurt in the past two weeks.
Colleen
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My hospital has the cold caps. I think doing this would make chemo so much easier. My med onc says there is about a 50% success rate. Is it that low? I thought I read it was higher than that......anyone? Did you depend on your hospital to have the right temperatures for the caps and assume they were maintaining that or did you bring your own on dry ice? How bad was the freeze? I only have to do 4 cycles of TC so it's only 4 times. I keep saying "it's only 4 days that will be miserable instead of a year of a wig". How did you get through the freeze? I am always cold and hate being cold, but I hate the thought of being bald much worse. Did any of you gals workout during chemo and cold caps and have any issues with hair? I teach aerobics....two classes a week and hope to get some classes is on the days that I feel OK - it would feel normal to me (though nothing else seems normal anymore.....). I am on a break from classes now. Had my BLMX last week and doing great. Hoping to teach some classes as soon as my PS gives me the OK. If I don't teach, I would still like to exercise and not worry about making my hair worse. Suggestions or experiences you can share on this? I am trying to read through this looong thread but there is so much to read!
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HI MDG - the cold caps are so doable...I am done with 2 of 6 TCH. The first round was OK - but it was all so new, it was a long day. We now have routine. I have my hair. I have friends that are still in wigs six months after their chemo. I feel really lucky. However, the hair angst absolutely exists with cold caps, the worry, the shedding, the obsessing. But, I have to say it is all worth it. I went to my first and seventh graders events last night and people are confused...am I healthy or not? why do you still have your hair? you look so good...why?
In your chemo you will have alot of drugs. The Ativan helped me with the nausea and put me a little in lalaland which my husband and friends said was a good thing. I really just laid there, got up for the quick cap exchange, then went back to my laid out position. It is really quite uneventful. My husband and friends did all the work, watched the clock, kneeded the caps, and wrapped my head. Really, it is easy!
It really helps to read through the entire discussion board. Lots of tips and tricks. I believe I will keep most of my hair. I also know, I will be stressed about my hair months after the chemo ends. That is just life! And, no, I have never cried or obsessed about hair before. It is all new!
Best of luck...keep us informed. It is a wonderfully supportive group of women!
Annie
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Oh, regarding the exercise...wish I were doing more, but I am not! Remember though that people are doing cold caps in cold states/countries and warm...no real recommendations, but you will hear a lot of different experiences on this!
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The success rate depends on your particular hair and which drugs they give you. I'm sure if you asked Frank, the percentage would be much, much higher ( he gave me 90% success rate on the same drugs). I bet your oncologist doesn't want you to get your hopes up because there are an unlucky few that it does not work for. Read this blog and your spirits will soar as you read how many have done well with the caps.
The real discomfort is when the first cap goes on. If your skin and ears are covered, the discomfort only lasted less than five minutes with the first cap. When some of the caps (not all) were changed, I had less than 2 minutes. I also got one of the recommended items, which is an electric throw. (I got mine from Bed Bath and Beyond) I had that cranked up on high the whole time I was in caps.
Exercising on chemo, even if it's just a short walk on a bad day, is very important. Just listen to your body and do what you can. Just don't push yourself. My worst days were right after (mostly the anti-nausea drugs) and about four days after. I tended to be very constipated, although some of us had the opposite problem. Just listen to your body. Exercise should not affect your hair.
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Re: cold vs hot weather... I did the caps during the spring/summer and I can't say that the hot weather made any difference with hair loss. I actually went to the beach about 1 week PFC, though I did wear a hat, but again I'm not sure if that changed much.
I have to reiterate that there will be anxiety in the initial weeks/months, especially with respect to the shedding and no, the anxiety won't totally go away, but after a while, you will start to get confident, especially when you wake up every morning and see a full head of hair.
I second mtri111's comments that the hair that is destined to fall will inevitably fall, but the hair that is there to stay will stay on. My fiancé (and cold cap team captain) actually termed this "survival of the fittest" for the hair: the healthiest and strongest stayed on. And now 7 months PFC, my hair looks healthier than it did prior to chemo and I am finding that I am shedding a lot less then before.
Long story short: yes, be gentle with your hair, but exercising and going out in warm weather probably won't make a difference. In fact, I would say if doing those activties makes you feel better and reduce stress then go ahead and do them since we all know that stress probably has a more nefarious impact than the slight risk of increased heat to the head.
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Hi mdg,
I also did 4TC@3. There was no pain associated with the caps; it felt like drinking a slurpee too fast for the first five minutes; after that the scalp is numb and there was a general feeling of cold. By the end of the treatment day I had the shivers, but nothing a nice warm blanket didn't resolve. (I was also icing toes and feet, which contributed to the cold feeling.) Doing the caps made the infusion day go faster, and kept me on a positive focus.
The success rate for TC is quite high: well over 90% is my understanding. It varies for everyone, as your overall health, age, condition of hair, and liver function all are factors. It is very important to carefully follow the protocol given to you by Frank and PCC. There is an extremely narrow window of opportunity for this treatment to work.
I not only exercised throughout my treatment, I had so few side effects (none, really) that I picked up activities. I swim every day and missed only 4 swims during my entire treatment (my 4 infusion days). I also took up weight/strength training with a personal trainer, took golf lessons, and took up martial arts for the first time in 27 years. I also hiked 2-4 miles a day. And of course I took a good power nap every day to refresh. I lost over 20 pounds, not from being sick but from being active and eating well -- I'm in the best shape I've been in years.
It's good to keep your scalp from overheating -- so no warm water on your head (for many weeks following your final chemo, even), and you can use caps from the freezer between infusion days for extra scalp stimulation and cooling. My daily swim effectively immersed my head in cold water for an hour each day, which I think contributed to my success.
It's well worth reading through all the posts here -- when I joined, there were 16 pages, and exactly one year later we're up to 67! It is wonderful to have such good support, and I'm glad to be able to pay it forward to new penguinistas like you!
Best,
Susan
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Just an update --day 58 for me--I went to my hair stlyist yesterday for just a trim of my bangs--she was shocked to see how well I am doing! She seems to think I still have 75% of my hair!! I will be doing tx #4 this Thursday of TCH!!! That was very good news for me!! I still have a daily shed--but hearing that I have 75% of my hair just made me feel so good to know all the hard work of the caps do truly work! I am so greatful!!!!
Sharon
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Yeah Sharon!!!!!! So excited for you...I love the update. It is so wonderful to hear the news. Keep it coming!
My update, I am on day 27 (2 rounds done of 6 TCH). I still have a lot of shedding at the nape due to big head and the cold caps did not reach. But, it was funny both yesterday and today my hair seemed weird, then I realized that I have so much gray growth that I need to cover in my hair AND my new bangs that were cut on January 6th (4 days prior to TCH #1) are way too long. Everything is growing!
I looked at my hairline and I have all these baby hairs sprouting, which is normal for me. I always have a halo of baby hairs. They are growing.
Oh, and I still can see random, lovely NEW chin and cheek hairs! LOL.
And just to be sure, i checked my legs and they are are bare as a baby's bottom. The down south region is quite sparse. Arms are a bit thin/free of hair. Nose hairs the same. So, the chemo is making it everywhere!
Happy saturday. It is going to be over the freezing mark here! Celebrate! Love the cold caps!!!
Annie
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So may posts!!
Welcome mdg~ I too had TCx4 @3weeks. Am 23 days PFC now and have most my hair... I'm 45 and a runner. I worked out, got outside, did something almost all days. I had a LD flap back in Septmeber and wasn't able to do my yoga like I enjoy but continued to be as normal as possible in my exercise otherwise. I don't think it had any ill effect to my hair (although I worried about it). I did take naps and got worn out more easily, but always felt better after long walk/jog etc..
I agree with everyone who has said your mental health is as important. I did stop drinnking all alcohol and caffinated coffee during chemo (liver function) and gave up aluminum based deoderant. Also, I took a Norco 20 minutes before the first cap each time but Tylenol or Advil probably would have been OK if you are against stronger drugs. The first cap is truly the only cap that is uncomfortable. My helpers were wonderful b/c we figured out it was less than 5 minutes of discomfort and they would say you can do this, etc... The other caps were never as bad as the first few minutes. My thinking was like yours -- its one day every 3 weeks 4 times...and compared it to the alternative ... knew I could do it.
Every surgeon, doctor, oncologist I talked to kept saying chemo is "doable" -- I think they should shove that word somewhere(:-) -- well to coin their phrase -- the caps are totally "doable" And for me completely worth it.
Sharon~ So glad to hear your post! You sound very happy about your results so far! That's wonderful!
Day 86... 2 more weeks to my 100 days! Celebrating by going to Vegas with my BF for her 50th birthday... planning on getting a trim before I go. Think I will still wait to do any coloring.
(Sorry for the long post... guess I'm chatty this morning..)
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You are all giving me so much hope! I want to do the caps. I am calling on Monday to get it scheduled and set up. I am doing TC X4 probably starting in March. Did anyone else do their caps at Beaumont? I have read on here the freezer temps were not correct. Anyone know? How do I prevent this from happening? If you used caps that were available at a place that had their own freezer, was the temp an issue? I don't want to do all of this and then have it not work because the freezer wasn't the right temp.......I am getting paranoid! Anyone else on TC that can share results???
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HI mdg...
I had 6 treatments of T/C that started September 24th and my last one was January 7th. I am 29 days PFC and have a full head of hair....I probably lost about 10-15% of overall thickness and lost at the nape of my neck and around my ears (but now have little sideburns!)
Like the other ladies have said, T/C seems to have really good results...in fact, there are a lot of cocktails that do well...just make sure you follow instructions as outlined for you and you will probably do wonderfully! Ask questions here and someone will get back to you with the answer or how they handled a particular situation.
Good luck to you!
peace and prayers,
Tori
DE COLORES!
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Welcome mdg - I also did TCx4 and my story is very similar to Tori's. I am now more than 6 months past my last treatment and I have a full head of hair. To me it seems exactly like it was before except my sideburns (hee hee) are about 3 inches long. They make me laugh. That's the only place on my head that I had complete hairloss. Unfortunately I'm done enjoying having less hair fall out than usual as the daily fall out is back to normal now (maybe 40 hairs - not sure). Like Julia and others have said, the success depends on a lot of things but it seems that if you are in good health, follow the instructions and are doing one of the taxane based regimens (taxol or taxotere) the results are at least 90%. AC (particularly the A) seems to be harsher on the hair. People still have success but it seems the hair thins more on the A.
As I'm sure you have read, the whole process is a big pain in the butt but it's so beyond worth it. It seems to me that a lot of the women on this thread do so well with the rest of the chemo side effects because having hair means not looking sick and not looking sick means not feeling sick (IMO). I also think having hair gives you the confidence to go outside and move around which is important for managing the side effects.
You had asked about Beaumont. I am pretty sure this is where GolferGirl had her treatment of TCx4 at the same time I did - May to July 2010 and she did great. Total success.
Good luck!
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Just a note for potential new cap users. I just finished week 8 of 12 on taxol/herceptin. I also started doing the caps myself, yes, myself, and have the system down to an art. I actually prefer the alone time, since the benadryl makes me just tired enough that I am not real good company. There is a tv in my private space, and I use my electric blanket, and carry my other supplies in a bag. This would be a little more difficult in a crowded unit with no space for a cooler around you though, 1 can be stored close by. I use 2 coolers with pull handles/wheels, with 4 caps each, in front of me for my work area, and use a cooler for a foot stool between caps. So it can be done if necessary. I was worried about not having anyone to help me for all 12 treatments, and found it stressful worrying about someone not showing up...etc. After someone cancelled at the last minute 2 weeks ago, I decided to try the system alone to alleviate this worry. I had a friend come with me and just sit there while I did the tx myself, then after that, I was alone. So, If anyone lives alone, or lacks a good solid friend network, and would like to know more about how to do the caps yourself, feel free to send a personal message. If I had only 6 treatments to do instead of 12, this would be so much easier...really, if you are wondering if you can do the caps for only 6 treatments, think of me doing weekly treatments x 12, and by myself,....it can surely be done, have no fear!! By the way, I have had slight thinning as everyone does, but I still have a nice head of hair....good luck to all.
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Hi there everyone<
To mdg: In answer to your question about bad temp in freezer. It had no effect, I guess -28 celcius was cold enough, because I still have my hair!! As it turns out the freezer wasn't malfunctioning. We were putting the caps back in the freezer after using them, because no one told us not to do so. When you use the caps for 1/2 an hour on your head, the temperature rises slightly and if you return the used caps to the freezer they raise the temperature in the freezer a little. If you need to reuse a cap or 2, you can return them to the freezer, but not all the caps. We returned all the caps to the freezer that 1st time, and raised the temp. in the freezer with each successive cap. Doing the cold caps at a facility with a freezer is extremely "doable"!! The chemo goes by almost unnoticed, because everyone is focused on the caps!! Good luck to you.
To mtri111: Thank you for the info on generic Latisse. I have a few more questions. I used the small brush that came with the bottle of product. I applied to my eyelid at bedtime. Is once a day(or night) suffucient? Can I use eyeliner during day after applying at night? Do I need to wash it off or just apply eyeliner directly on lid in the A.M.? Thanks again for all your info and help.
Keep Positive!!
Nancy
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Hi everyone,
I also am doing TCx4. I finished treatment 3 last week and still have lots of hair. I have washed my hair about twice a week using warm (tepid water) and that doesn't seem to be an issue. I exercise every day, usually walking about 2.5 miles and then about an hour of yoga, cardio, kenpo or weight lifting. For about a week following the actual infusion I find I get tired more easily so I will just do stretches instead of the more active routines, but I always walk. I think the exercise has been key. I feel great most of the time and the side effects have been minimal. I've lost 10 pounds and I think I look pretty good (especially with my hair) which helps me feel good and beat this cancer and chemo thing. I live in the cold northeast so I wear a light cotton cap when I walk outside and I wear a satin sleep cap when I do any exercises on my back that result in my hair or head contacting the floor. I still obsess about the hair but so far I don't think I look like I have lost much.
I highly recommend the electric blanket during treatment. It's doable and worth it.
At my last appointment, my oncologist who was skeptical said that if I still have my hair after the last treatment she wants to discuss the protocol and figure out a way to get the word out to all of her patients so they will have the option. I am really happy about that so I am hoping to make it to the end with hair.
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Hello again,
By the way I got my electric blanket at Sears. A Twin size was $29.95
Nancy
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hi Nancy (keeppositive)
Re Latisse:
use once per night; no washing off needed. Yes use eyeliner or anything you want to in the day. Just see that the latisse brush is fine enough to paint the line of the product right along the lash line. I also used it on lower lashes an dbrows.. Dermatologist said sure, do it!
New folks here, please do PM me(send your regular email address to me there) for Cold Cap use flyer, hair care tips and Tips Table for managing a host of chemo side effects. It really is possible as many of us have show, to reduce the side effects and keep on pretty normally.. with hair!
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A question--and concern--I will be 52 in April--I do believe the chemo has thrown me into menopause--sweats--worried it will interfere with the caps--me being so over heated? It seems as though I have gained 5 pounds in a matter of days---no diet change, I eat very clean---has anyone else experienced this? Just wondering if this is just another Se--sweats--and rapid weight gain???
Sharon
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Hi Sharon - I have been going through the same. I am 43, on #2 of 6 TCH. Had all the same issues. These caps seem to work all over the world. Warm or cold. I would not worry about your own core temps, besides, you can not change that. Not sure about the weight gain issue - I have that, but I am eating a lot since I have been on decadron!
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