Cold Caps Users Past and Present, to Save Hair
Comments
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shawnlo that is very interesting! How many caps did you buy? How cold will you get them? How long will you wear them after the infusion? I hope they work for you!0
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Congratulations Golfergirl!!! So happy for you! And Cheyenne--you really have to quit worrying so much-remember the lactic acid..... Miss talking to you-I have been so-o busy and that's a good thing!! Ordinarymomma--You are so right-it is so worth it! One thing I have noticed is that the women using cold caps - and I have talked to alot of them for the last year-seem to focus more on their hair and not on all of the side effects of chemo so much. Sure we have our lousy days but keeping our hair intact is such a relief-I think we get a rush of adrenalin or something. Everyone is so up beat and working and living as normal as possible going thru this horrible treatment. Just seem to be just plain happy the they are not going to be bald. I truly believe it helps in the recovery process so much. Glad everyone is aving good results!! Take Care Everyone-- Geralyn
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GaGirl01,
Hey there from Texas and so happy to hear all has gone well for you so far. I have read that you are a runner as well and would truly appreciate it if you would tell me your regimen in regards to maintaining your hair/exercise. I start my chemo on 10 August every 3 weeks of Taxotere/Carbo/Herceptin for 4-6 cycles. Will be using the Penguin cold cap therapy. Any advice would be appreciated.
Lacy
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Bridetobe - Congratulations on finishing!! Will you be getting married soon?
Golfergirl- my hair is fully intact as well. I have one more 'round' of shedding to go. I'm on day 82 of 84 (but who's counting - heee heee) and the shedding will probably start in a few days. But I'm sure I will still be fine after that. I think this tweaking of the regimen that Frank has done has really worked well for TCx4 users.
shawnlo - good luck with your treatment and definitely let us know how it goes.
gmp300- You are totally right. Us cold cap girls tend to focus more on our hair but since our hair is actually staying on our heads we tend to have a better attitude overall. I guess if you think you look good you actually feel better (haa haa - just realized what I said - LGFB). I have to say that I think my onc is more surprised at how well I handled chemo even more than the fact that I kept my hair. Every time I go in to meet with her I feel like she's giving me a strange look because I really had no side effects to speak of except for the normal fatigue for a few days. My center is going to do a study now because of how well I did. She was interested in the caps before she met me but seeing is believing I guess.
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to drim and all other post-chemo PCC'ers: Just wondering more about post-chemo protocol. I'm at 5 weeks post-chemo (Monday will be the 6-week mark), but tonight when I had my bi-weekly hairwash I still had lots of sheddding. Nobody but me could tell I've thinned the hair. I'm still using cold water; being conservative, have decided that until my shedding is normal I'll continue with cold water and bi-weekly lite washings.
I'm just wondering what other PCC'ers post-chemo experiences have been in terms of when the shedding slows down etc?
Thanks everybody! It's great to see so many new users find out about this. I met with a new rad onc nurse this week and she was astounded by my hair. It was very gratifying, and I know she'll help get the word out (which is my real goal!).
Golfergirl: do you really golf? I'm beginning lessons this weekend. It's been on my life "to-do" list for years! email me offline at sebm9@earthlink.net!
Happy hair and best to all,
Susan
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Hi,
I am day 5 past my second TC. I think my hair has thinned a lot. It is still past my shoulders, but the ends look really stringy. My last hair appointment was in early May and I was diagnosed on 5/18; so I am way past due in getting my ends trimmed. I am hoping that the hair starts filling back in, or at least stops shedding.
BTW--I have also noticed that the posts on this thread are more upbeat. I can't help but think that being able to go out in public and not have people know that I have BC and that I don't have to explain anything to strangers is a major stress reducer!
Colleen
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cmksocal: You're at the point when, in my treatment, I lost the most. But not to worry! Keep following the protocol. My hair looked its stringiest around that time, but then it seemed to get better (or else I got used to it). I just had my ends trimmed and it felt great, but I did wait til I was out of my final danger zone. Mine kept shedding throughout all treatment but the hardest seemed to be right around that second TC. The final/fourth TC is what finally knocked my eyebrows out, but they're coming back. (I noticed that my new eyelashes are coming in white! I kept about half my eyelashes, but now I have salt and pepper eyelashes! Oy!)
Yes, the posts here are more upbeat! I've had many nurses and doctors remark not just on my hair, but even more on my attitude, energy, and relative lack of SEs. I think it's all related. I was proud to go out while on chemo -- exercising, lunching with friends, walking -- and I'm certain the added activity and confidence had everything to do with how I handled treatment, both physically and spiritually.
Susan
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Has anyone used the frozen gel filled eye mask (?) as well during their chemo infusions? Just wondering if this would/has helped with not losing so much of your eyelashes and brows. Was thinking about doing this in conjunction with the cold cap therapy.
Thanks tons,
Lacy
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To: Ordinary mammal,
The Elasto-Gel Cap made by Southwest Technologies, Inc., phone is 800 247-9951. The caps are to be worn 15 minutes before treatment and 15 minutes after. They suggest changing every 30 to 45 minutes. I plan to bring them in a cooler with dry ice.
Keep in freezer at temperature -25C to -30C. I bought 2 for my TC and plan to switch them every 45 minutes . I go in this Tuesday. I'll keep you all posted.
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Susan - I'm just about 3 weeks out and it seems that most of my shedding occurs starting at day 21 and lasts about a week, so for me that means I expect to have a bunch of shedding when I wash my hair tonight and then for the rest of the week. I too will continue on with the cool water and wash twice a week until I feel like the shedding is normal (it actually was normal this past week but week 3 of each treatment was always my best week. I now wonder what it's going to be like in a few weeks. I think the shedding is happening so gradually that I can't really tell that its thinning but I'm sure it has.
I definitely need a trim but the dryness seems to be calming down. It was really awful last week. I am going to start taking silica gel to help strengthen hair and nails. My nails are fine but I'm going to be on herceptin all year and that is supposed to take a toll on nails.
My eyelashes are still fully intact. They aren't that great to begin with but they are there. My eyebrows are starting to grow in - especially on the left side but you can see that the original hairs are very thin. I wonder if these new sprouts are here to stay or if they will fall out.
shawnlo - definitely very curious about the elasto-gel caps. I did go to the website and it seems like the cap comes all the way down to your eyebrows. That's pretty neat.
Lacy - I didn't use the brow bands. I wanted to but never could get my hands on them. I'm sure they help.
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Hi all,
I did use the brow bands but not for my brows, I wrapped them at the nape of my head for added protection, since I had heard that was one area that people had reported some more loss. I'm not sure it actually added anything (I was quite eager to use anything at my disposal to protect my hair) but I didn't lose any hair there.
To those worried about thinning, one option I tried was hair extensions. I ordered some "real hair" extensions (the clip-ons) off ebay and used the small clips in areas where I felt I had thinned the most. They're fun to use when going out, add a bit of dimension and give more colour to areas that turned grey. That being said, I don't usually put them on, since my slightly thinner hair actually is easier to control in hot and humid conditions like we've been having.
Also, for eyelashes, I used Latisse and did not lose much if any of my eyelashes. Unfortunately, can't say the same about eyebrows, but they can easily be penciled in.
Drim, yes I am getting married! Before I started chemo I told Frank that I was waiting to see whether the cold caps would work before setting a date for the wedding because there was no way I was walking down the aisle without my long hair... well they worked and I set the date. We are waiting until June 2011 because I still have to have surgery and reconstruction but I am thrilled I will have my long hair for my wedding.
Susan, its so true what you said about going out in public. I just returned from a mini beach vacation and felt completely comfortable being out there post-chemo. My soon-to-be DH kept telling me "look at you, you just did 5 months of chemo and you look just like everyone else". Felt like our own little secret. Not sure I would have felt like going to the beach had I not done the caps...
Anyways, all this just shows how much of a blessing these caps really are.
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Elasto-gel also makes goves and slippers for chemo. Taxotere is hard on the nails. I heard about the hats and gloves after my first treatment. I had already started to loose my hair but decided to try to save my nails. I have 2 pair of gloves and change them after 45 min. My onc has a freezer so I carry my gloves on ice packs and put them in their freezer to keep them cold. I have one white line across each nail from the one treatment when I didn't have the gloves but otherwise my nails look great. I keep ice in my mouth during the drip to save my taste buds. I made half size ice cubes which fit in my mouth better than a full cube. I start icing 15 min before and continue through the drip and 15 min after. I have managed to save my taste buds when I use the ice with no mouth sores and no fuzzy tongue. For my fourth treatment I decided to try to save what is left of my eyebrows. I took sandwich bags and put 2 cubes of ice in each bag and rested it on my glasses so the ice was on my eyebrows and then I put a headband across my forehead to hold it on. We will see if if works. The ice lasted about 20-30 minutes so they had to be changed often. My daughter or husband go with me each time to help me with my icing! I have ordered an Elasto-gel sinus pac to see if that will work. It would cover the eyebrows, but also covers the eyes so might save eyelashes too. I just wonder what it will be like to sit blindfolded for the 2 hours. They are not expensive and would need to be changed out every 30 minutes.
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Hey ladies~
I know this is off topic but for the ladies that have finished treatment -
I sometimes feel like I am "somewhere else" when I am playing with my kids, speaking to my husband etc. It is almost like I have checked out for a minute or so. Do you think my mind is just needing a breather? I could not remember things before chemo and I really cannot remember things now...
At least I have my beautiful hair...
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Ang7: I definitely have that experience too! It isn't physiological (I don't think), so much as the fact that I have been on (and am still in the middle of) a core, spiritual, psychological, deeply personal journey of survival. My brain needs rest just as my body needs rest. Though I quickly realized it was more difficult (energy-wise) to speak or write as usual, it took me some time to realize that it was equally challenging to be an active listener sometimes. And heaven forbid there be multiple channels competing for my attention: tv on, husband talking, phone ringing, dog begging for attention, computer in my lap...the computer always won! :-) Especially when checking in with other PCCers :-)
I emailed with two new PCCers tonight, I've encouraged them to join the list as they begin their journeys.
I also had my first acupuncture treatment since my final chemo; my doctor hadn't seen me since my eyebrows fell out, but she was again absolutely amazed at my hair and the caps. In fact, she wants to see if she can be part of a clinical trial, wants to get a freezer installed -- I can tell she is going to make this happen for my cancer center. It will make it so much easier than if having to organize the dry ice method.
Cheers,
Susan
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Hi Ladies. I wanted to let you all know how you might save some money on expenses using the cold caps. I have been helping a woman with the caps. She is the 3rd person I've helped with the Penguin Cold Caps. I don't know why I didn't think of this until now, but I thought, "Hey, I wonder if we can return the unused dry ice?" They took it back the last 2 times! We saved $200.00 on ice expenses!!! You might want to use a different supplier each time. And whatever you do don't tell them what the ice was used for. I'm sure they'd think bio-hazard...
I live in the Orange County area and I'm looking for a way to make an income, so, I can get the Brava reconstruction operation. If you need help with the caps, I'm willing to travel anywhere as long as my expenses are covered.
Lacy-The eyebrow band is great for covering the nape of the neck and getting good coverage at the temple areas. If you can get them, do so. Don't bother using them for your eyebrows. I think it's just too much cold for a person to have to deal with. One woman I helped tried the finger nails and toe nails in frozen peas. It was not worth the hassle to her, so she only did it twice.
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Hi,
Makingway--I'm glad you are making this a job. I actually was telling my husband that someone needs to start offering this service. Not everyone has friends/family that can do this. As for returning dry ice -- interesting idea, but we have the amount pretty precise now: 40# in the 72 qt cooler with the caps in their keep boxes the night before the chemo gets the caps to the right temp by noon the next day. BTW--one of the dry ice vendors I spoke to in LA, knew about the caps and had supplied the dry ice for a woman several years ago.
Laugh of the day -- couldn't stand the hair on my legs and had to shave yesterday! This after two chemo treatments.
Colleen
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Hi All - I am braving my first haircut in 4 months tomorrow. I'm 28 days post last chemo, so hopefully I've waited long enough. I'm still shedding but its less now than it was. I just feel scraggily and if I don't go now, I can't go for 3 more weeks due to my schedule and my hairdresser's schedule. So I'm going for it, but just a cut, no color or highlights. And I am taking my own shampoo!
By the way, I just got my prescritpion for Tamoxifen. One of the lesser side effects is thinning hair. Ugh! It seems there is always something....I am staying positive though, my hair and I have made itthis far, so I think we can make it through tamoxifen, too!
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are they 45$ deposit each and 30$ each a month plus shipping up front? trying to find out how to get em by mid august for my chemo in florida. anybody answer please!
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are these @90$ rental a month? is there a deposit?
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do you know if it is 45$ deposit each and 30$ a month rental and shipping up front? for the penguin cold caps? how long to ship? thank you
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how is it going with those caps? are they cheaper than the penguins? take care
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send me the message too please...
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Ginacolada--go to the Medical Specialties California website (google Penguin Cold Caps) to get complete information. Despite its name, the company is in England. To answer some of your questions. It is "about" $30-33 per month rental depending on the exchange rate. There is a $45.00 per cap deposit. Shipping is extra. The caps are shipped from either CA or FL. I was able to drive and pick up my caps since the facility was less than an hour from my house. If you email FrankFronda@msc-worldwide.com you can get the process started and if you can get the caps in time.
I don't know anything about the $90.00 caps.
Colleen
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If you are interested in the caps from Elasto-gel, this is the site you can order them from.
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10 days since 4 AC tx ive lost about 40 % of my hair, i still have 12 Taxol due to start in two weeks,
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Cheyenna,
I know the feeling of continuing to see hair falling out. Are you debating whether to continue or not? I would encourage you to keep at it. I can only speak from experience but I had two bare white spots around the ears and temples, and they have grew back somewhere between the 4th and 5th treatment. So if only for that, know that your hair will come back twice as fast than if you didn't use the caps.
Is the loss fairly evenly spread? If so, maybe look into human hair extensions. I sometimes use a couple of the clip-ons when I go out to give my hair some extra thickness and no one call tell the difference.
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bridetobe, hi yes its very even, just dry and thin, i got extensions but worried the weight might hurt my hair?? they did help a lo,t i wore them once yesterday, im not gonna stop but its costing me a furtune and i have 12 more to go.. its frizzie and thin, it looks like hell,lol... lot of gray is showing, not sure what to do about that? have u conditioned the ends at all? what treatment were you on? how do u make it look good? my was highlited so not in greatest condition any way, i feel embaressed when i go out. thanks chey
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Hi
I am in Houston medical centre and I am glad to find you . I would like to get your cold caps
How much it will cost me
Regards
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Hi
I am located in Houaton medical centre and intreastead in the caps
How much will cost me
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I am 31 days post chemo now and my hair (aside from the color) is looking pretty good. I went to myhairdresser over the weekend and got a trim so there is a style again. 4 months without a cut and it was pretty overgrown! My stylist was so surprised to see my hair. I did TCx4 and if you didn't know me, you wouldn't know I had done chemo by looking at me. I know I had lots of shedding, but I don't think anyone else can tell. And I've started to blow dry my hair on warm again this week. It fluffed right up and seems to be doing well. I am still only washing every few days, though, and no color or highlights yet. I plan to wait a few more months before doing those again.
Cheyenna, Sorry you've had so much shedding. I've been using Ojon spray on/leave in conditioner. I thik they call it revitalizing mist, but it has worked wonders for my chemo-dried hair. Hang in there!
By the way, I started Tamoxifen this weekend and I was reading the insert that says hair thinning is a potential side effect. Ugh! I am going to take the silica gmp300 mentoned as I want hair growing/thickening, not thinning!
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