Cold Caps Users Past and Present, to Save Hair
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yvonne- Gogle Penguin Cold Caps or go to the website msc-worldwide.com for contact info from the reps.
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Colleen: Thanks for the product advice. I'll see if I can get some from a salon. I got so frustrated with the frizzy dryness that I actually took a scissor and did my own trim job this morning. Most of my hair has become very curly (except the top of my scalp and bangs, which are still fairly straight). If I can't overcome the dryness with conditioning products, I may have to get a short "chemo cut."
Geralyn: Yes, long time - no talk. You were so helpful in talking to me before I started chemo. I finished my chemo 9 months ago and the dryness of my hair seems to be getting worse rather than better. I wonder if the shampoo and conditioner I've been using (Nioxin - which is supposed to stimulate hair growth) could be partially to blame.
Does anyone else have experience using Nioxin?
Best wishes to all of the other PCC users!
Lori
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Howdy everyone!! I will be starting my PCC therapy tomorrow (cycle 1 of 4 with Carbo/taxotere) so my caps will be available the 3rd week of October for anyone in the Texas area. Will be more than happy to meet anyone halfway. I live in College Station, Texas - home of Texas A&M!!! It cost me 215.00 of shipping fees alone from the California facility so if this can help anyone feel free to contact me.
captllgen@aol.comWill keep everyone posted and thanks for all the help from all of you guys!
Lacy
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Does anyone have or know of anyone who has any of these caps available without going through the company?
Has anyone considering making their own?
I am scheduled to start my treatment Thursday morning at nine with AC and something with a T later on. I am not sure I can afford this honestly, though I am considering making my own.....from what I have read, it is not that the thing that keeps the scalp cold, it is the fact that the scalp IS kept cold enough. Thanks everyone....you are all in my prayers.
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Does anyone have or know of anyone who has any of these caps available without going through the company?
Has anyone considering making their own?
I am scheduled to start my treatment Thursday morning at nine with AC and something with a T later on. I am not sure I can afford this honestly, though I am considering making my own.....from what I have read, it is not that the thing that keeps the scalp cold, it is the fact that the scalp IS kept cold enough. Thanks everyone....you are all in my prayers.
Oh....when i brought up this subject, my doctor didn't laugh, but he told me, "They don't work." He didn't mind me giving them a try, but if you could have seen his face....
I get so angry when I see educated people so unwilling to even consider something that wasn't taught them in a book....look at all of the good results here. It makes me want to show them all ....
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Hey all you fellow PCCer's! It seems like forever since Ive posted. I've been reading everyone's updates on my iphone, but having time to post seems like it never is able to happen for me! So much has happen...Golfergirl, CONGRATs of finishing treatments! What a woman!! And Drim...your always such and encouragement ;0) I wish I had more time to post on here and share more often. These last few wks have been such a struggle. I've continued to work through my weekly TH treatments, but the last few have produced se's of neuropathy. 2 wks ago I had to beg to continue treatments. I've also had a bad allergic reaction since wk 1 in an ugly "rash". This past wk they stopped treatments altogether to see if the neuropathy will lighten up as well as the rash. The rash went away, no such luck on the neuropathy. No treatment again this wk. They finally made me stop running a couple of wks ago (when I shared the neuropathy-darn!) Today I saw my Onc. and she pretty much said I'm done with Taxol. My body has reached it's maximum toxicity levels of the drug without permanent damage, and we'll just continue with Herceptin. I feel like I wasn't able to finish what I set out to do...just able to do 6 of the 12!! Stupid huh? My Onc. felt secure in her findings.... AHHH! As for the Pcc's I have a full head of long brown hair! I don't have hair anywhere else..Lol! Sorry to vent...It's been on of those days...
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Gosh, time is so precious isn't it?
I will pray that all the treatments you have had are just the right amount to fix you up.
Don't feel you couldn't finish what you started...you did all your body allowed you to, and that is good...our bodies speak to us, too. I am glad you have your hair, and LOL, that you don't have to shave.
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WhichWay2Run: the only way to obtain Penguin Cold Caps is by renting them from the company; they are not for purchase. I was able to meet Frank Fronda, the inventor/owner, and have a whole new respect for the incredible decades of research that he personally put into developing them. These are not simple gel-filled caps; the innards are patented (I believe titanium is one of the ingredients) and they are specifically designed to freeze the follicles according to your particular chemo protocol, your hair, your health, age, etc. The genius of the caps is that they chill and re-warm just above the frostbite line, thus maximizing the deep-freeze time for your hair follicles while protecting your scalp during the process.
Throughout my chemo, I kept running into nurses and medical professionals who said (like your doctor) "scalp cooling doesn't work", because they'd seen all kinds of methods of scalp cooling, from gel packs to people dunking their heads in buckets of ice, you name it. Frank Fronda has really figured out the very narrow window in which the hair can be preserved during chemo. If you were my sister or daughter, I wouldn't recommend trying anything else! Needless to say, I have no financial stake in the company, but boy did PCCs change my life, not to mention my cancer experience. If you decide to try them, I hope you can get them in time for the start of your chemo. It' be great to make a believer of your doctor (I made a believer out of mine!).
Best,
Susan
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Well said Susan! I hear it all the time from doctors and nurses -- "They don't work!"--Of course they are talking about other cold caps that have been around and unfortunatly still are. We all used Penguin Cold Caps-BIG difference! And Frank Fronda not only is a genius he also is the most compassionate caring man I ever met. He truly wants to help everyone!! I believe if he could let everyone use them for free he would. The cost of renting the caps is not bad if you compare it to the cost of wigs, scarves, turbans, special hair products etc it is not bad at all. Thanks for sharing! Geralyn
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Hey GAgirl01~
Hang in there and know we are thinking about you...
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Hi everyone - it's been a while. I just got back from Puerto Rico and had a great time. I have to say that there is no way I would have gone on a vacation like that if I didn't have my hair. At least I think I wouldn't have. My hair is definitely dry but I think I'm past the shedding now which means my results were really really good. I'm sure my hair is a little thinner that it would otherwise have been but its not at all noticable.
cheyenna - I'm so sorry that you're not thrilled with the way your hair is doing but congratulations on getting past the AC portion!! That's huge!! Hopefully you will find a way to make the best of what you have.
GAgirl - I know you're disappointed but I think you did great. You got in half of the Taxol and now you will continue on with herceptin which is most likely what will catch anything in the unlikely case that something has escaped (if I remember correctly you had a very small IDC). How wonderful that you have all your hair. Please stay in touch and let us know how you're doing.
Golfergirl - congratulations on making it to rads with a full head of hair. How exciting that you got a haircut. When the pros washed your hair did they say something about the amount of hair that fell out? Did you tell them what was going on and why you were bringing your own shampoo? I'm still kinda scared to comb my hair. I do it really carefully and not very often. I still won't trust anyone else to touch it. Did they have any words of wisdom for your hair?
Susan - I completely agree with you. All of the cold cap doubters are people that have seen other (non-Penguin) versions that did not work. None the less, I wish everyone well in their journey no matter what they try! How's it going with the rads. I just had #2 today so of course I have no clue what I'm in for but the process itself is nothing.
Lacy - GOOD LUCK!!
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Drim, Congratulations on your vacation! I'm thinking about taking one when I complete rads, right before Labor Day, if my PTO lasts at work (I might run through it by then if I can't work half-time through all the rads). I'm in week 4 and today is officially my halfway point (17 of 33 treatments). Skin just started to become a little pink, but I keep dusting the treatment area with corn starch, my new best friend. I have hoarseness on the left side of my throat, a little dry cough, and a little stuffiness in my left sinus. I'm convinced it's an effect of the rads on my lymph system on the left (my treatment side). It could be a virus, but it's odd that it's left side only...time will tell! Otherwise, no fatigue.
And the rads care team loves the PCC story. Transitioning from chemo to rads is interesting, in that with chemo everybody (but me) lost their hair and I was an anomaly. With rads, many folks haven't done chemo, so having hair isn't unusual. My rads team constantly comments on my positive attitude, but I wish they knew how much was due to having discovered PCCs! It's carrying me through the whole journey.
I am still shedding, though. Washed my hair today and it was a little less shedding than last time, so maybe I'm rounding the bend. I forget what normal shedding is like...
Today I noticed that I have little one-inch hairs -- which obviously began growing during chemo (amazing) -- but they're all coming in white. oy. Then I thought how cool it would be if the hair above my right ear, where I lost a pretty solid portion of hair, grew in white and I had a Bonnie Raitt kind of look. Gotta stay positive
On Friday, I'm coaching a new user, a woman in my neighborhood who was referred to the caps by her oncologist (yay). I am encouraging her to join this group for support, I'll try to show her how it works -- this group has been an awesome support network for me.
Best to all from foggy Berkeley (I was just hitting golf balls while wearing my parka!),
Susan
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Thanks, Susan and Geralyn.
I am so grateful for all the technology we have to help us with this disease. I am holding off on my chemo until I can afford to get these caps, my family is NOT happy about this, but, I feel like it is the only thing I can have a say in, so I am doing it. Some of them are so sweet about it, trying to let me make some decision, and others are having a fit. I guess I should hurry and get started, I found out about this July 10th, 2010. I just am not in a rush to do this, though my doctor says most people want it out yesterday. I will be take AC for eight weeks with Tax....something for 12 weeks after. A couple of my nurse friends think that is overkill, but I don't know if it is or not...both had breast cancer with slightly bigger tumors than mine. I have a 1.5 cm tumor left breast on the the upper outside and one positive lymph node same side. It is called infiltrating ductal carcinoma, stage II. HER2 neg, Estrogen/Prog Positive, and it is slow growing (I forgot what that test was called.) I have completely given up sugar and white flour and started juicing, for some meals, though I am eating meat and dairy in smaller amounts than I did before I found this out. When I juice mostly during the day, I feel the best, and I feel just a bit tired and sleep more when I don't.
I can't wait to get the caps so I can start the chemo, even though the chemo is the most frightening part to me....like it is for all of us, I am sure. I wish all of you the best, and will keep everyone in my prayers.
Sending love to all of you,
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Peggy, Good for you in taking a stand and owning your chemo experience! Way to go! You are going to do great. A friend of mine has co-written an (unpublished, yet) cancer support book and one of the great lines in it is: Cancer is an Emergency of the Mind. Meaning, we react to the word "cancer" and rush: rush to treatment, get overtreated when we needn't, forego second opinions which are essential every step of the way, go through stuff without taking the time to realize we need to understand it all, because we're understandably overwhelmed and afraid and not yet caught up with the vocabulary of it all! A few days' delay in waiting for the caps to arrive -- or getting a second opinion or additional testing -- will no doubt be fine with a slow-growing cancer, which is what yours sounds like. In fact, those extra days may make your entire experience very different in the most positive ways.
My tumor was similar to yours, but I took my time making decisions because I knew I wanted to do this right the first time, so that it would be the only time I had to go through this. Getting it right, with the best tools we have, is important! Great that you won't make decisions out of fear, but are keeping focussed on the positive outcome you want to have at the end of this journey you are taking. Those who are worried will learn from you, and they'll take their cues from your positive attitude and your strength in owning this battle. Maybe you can help them by turning them into your "helpers" with the caps on infusion day, or making meals for you, fielding phone calls or visits when you're too tired to cope, etc. One of the big skills I learned was how to manage/delegate that stuff (for example, my husband became the "Information Guy." If anybody wanted to know how I was doing, they had to check in with him -- I was too tired to put together a sentence let alone field dozens of emails and phone calls. My mom eventually forgave me and came to better understand what I was going through. And he had more energy to describe my experience than I did! They've got a whole new level to their friendship now.
A couple of questions/suggestions: have you had a second opinion on your proposed chemo treatment? There's a wide variety of opinions out there. A good doctor will encourage and welcome you to get a second opinion; on the good side, they'll be validated; if not, they'll learn something, which they should want to always be doing. Also, did you get an Oncotype DX test? If you ever aren't sure what the numbers mean, don't hesitate to talk to your doctor. You should feel completely comfortable calling your doctor and asking them to repeat things. Remember, you have all the clues and they are the one trying to solve the mystery of your cancer! You should feel comfortable telling them about every twitch and itch and burp and stubbed toe. You may think it's not related to anything, but it could be vital information in the mystery they are trying to solve.
The number associated with the rate of cancer cell growth is the Ki-67 number (should be on your pathology report). The ER+, PR+, HER2- stuff is all good; the one positive lymph node is not so good but the upside is that it's only one node positive, not several. So, at Stage II, you've caught it early.
A few things you can do right now to begin protecting your hair even before you begin Penguin Cold Cap treatment:
- stop using deodorant with aluminum, right away. When processed in the bloodstream it creates a kind of bonding agent at the hair follicle root and can actually trap chemo at the root.
-- don't color, perm, blow dry, use curling iron, etc. on your hair and use gentle shampoo. And enjoy the warm water when you wash because it'll be awhile before you can use anything but cold water on your head! :-) If I recall, PCC recommends that your last shampoo before chemo is 3 days before your infusion. (I rinsed my hair in cold water every day, to at least try to rinse dry scalp flakes, etc. out during that initial drying phase of chemo #1.)
- start hydrating now, and avoid alcohol and caffeine (and yes, sugar). WATER WATER WATER. Your liver function will be one of your best friends in detoxing chemo, and the faster you detox chemo from your system each session, the better chance your hair will have. Interestingly, Frank Fronda told me that us carnivores actually have slightly better outcomes than vegetarians! So good to reduce red meat, but non-soy protein (since you're hormone positive) will be important. The nutritionist on my care team has been a fantastic resource, not only when I was navigating food during my chemo treatment, but now that I'm in rads, and re-building a healthier diet going forward.
And great that you've discovered this group! I found it to be powerfully helpful in going through chemo as a PCC user.
Best,
Susan
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Hi All,
Just wanted to share a link to a story about my use of the cold caps. The story is in the digital newspaper out of my the Annenberg School for Communication and Journalism at the U of So. Cal (where I am a professor). I think the student did a very nice job. She interviewed Frank Fronda and my oncologist, as well. Since it is a digital paper, you can leave comments at the bottom of the story.
http://www.neontommy.com/news/2010/08/cold-cap-therapy-may-help-cancer-patients-keep-their-hair
Treatment 3 (of 4) is next Tuesday.
Colleen
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Great article Colleen!
I wanted to mention that I found a website, www.inlovewithbodycare.com that has some natural products. I have been emailing the owner and she is sending me their natural deodorant since all the other ones I have tried do not work for me! She mentioned that they have a product that helps to stimulate hair growth? I am considering using it since my chemo was 5 months ago and my hair is pretty dry. As their products are all natural I was going to mention it to Frank Fronda. I will let you know what I think about their products...
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Great article Colleen! I liked reading Dr. Garcia is now a believer and will help spread the word about the Penguin Caps. It's only a matter of time before they will be a mainstay along with chemotherapy. Why aren't the so called "breast cancer 'support' organizations" helping to make the caps available???
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Hi everyone! I really appreciate this thread!
I'm starting my chemo on Tuesday, Taxotere and Cytoxan x4 cycles, and ordered the cap on Friday. I haven't received the caps yet, but I'm supposed to on Monday.
I live in Illinois, and was wondering where everyone got the dry ice. I called some suppliers, but couldn't reach most of them because it's Saturday. I'm running out of time and getting very nervous...
Could someone please give me inofrmation?
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Try Smart and Final. Not sure if you have those stores there...Google dry ice and Illinois. See what pops up.
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dear makibgway, thank you for your reply! unfortunately, there is no smart and final in my area, but i was able to contact a past user of PCC in IL, and got a number!
I think I'll be able to get it!
thanks for your help!!
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sayuri, i got mine at our local grocery store, (Safeway) three grocery here in Redding carried it, goodluck...0
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sayuri: I got mine at a company called AirGas, which supplies dry ice (and other medical gasses) to the hospital where I work. I googled Dry Ice Illinois and came up with a url of distributors at http://illinois.uscity.net/Dry_Ice/
The AirGas in Richmond CA, where I got mine, was open 24 hours/day except holidays. They also sold to retail groceries (slightly more expensive) and would even deliver for a fee.
Looks like AirGas also does business there, depending on where in Illinois you are located. You might also contact your hospital to see who their dry ice supplier is.
Good luck!
Susan
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cheyena: thank you for your help! i hadn't checked with the supermarkets yet. i think i'll ask around today!!
Susan: thanks, susan! Air Gas came up, when I googled. i got the answering machine, so i didn't know they were open 24 hrs! i'll try again!
frank also called me yesterday, and gave me a number of one supplier. i was kind of anxious, but all your helps made me feel alot better!!
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Sayuri: I'm not sure if your AirGas supplier is open 24 hours for pickup, mine was (their business office was open during regularish business hours). They'll be able to tell you. Good luck!
Susan
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Found my local dry ice supplier through dryicedirectory.com. In the USA and Canada, you enter a telephone area code, and it comes up with suppliers.
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Susan: I guess Air Gas is open only on weekdays, here in Chicago.
ordinarymammal:Thanks for the advice! I found a supplier that was open on weekends, and was able to order 70lb of dry ice!
I also got infrared thermometer at Sears, so pretty much set for my first chemo on Tue... just waiting for the caps to arrive tomorrow! Frank said I have to practice, practice... Does anyone have any tips on putting them on correctly?
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sayuri - good luck on Tuesday!. My tips would be first to watch the video a few times. In terms of putting them on correctly, make sure the cap is centered on top of your head and that the front flap is low enough so that your hair line gets covered. I always felt like as the back was getting fastened, the front came up a bit. You should put the chin strap on tightly at first but then loosen it once the cap and the elastic bands are on securely. Make sure the cap is on as tightly as possible but know that the elastic straps will do a lot of the work so make sure those are put on such that your hair line and nape of your neck are covered well.
You should have moleskin to put on your forehead and temples and pantyliner on your ears so they don't freeze. Make sure to wipe the frost off the inside of the caps before you put them on your head. It will help prevent frostbite. If the chinstrap bothers you, you should put something soft underneath like a shammie.
Please let us know how it goes.
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Hi all,
This is my first post to this group. I was diagnosed in April with lobular carcinoma and my one breast was littered with lcis. After a bi-lateral mastectomy I am now doing chemo which I began on July 29th. I have 3 more treatments of TC to go
I used the penguin caps for my first round of treatment. I got some frostbite on a big chunk on the top of my head- it blistered a bit and has been peeling/scabbing. I'm getting pretty stressed about it- the area is still sensitive and full of scabs. The scabs once they detach from my head are cemented to my hairs-there will be a dozen or two hairs in a piece of the scab. If I try to remove the scab hair comes with it. If I leave it alone I've noticed that it'll still be in my hair w/some hairs that have detached. So I feel like I can't win either way! The scabs are hard and tough- I'm wondering about trying to soften them. I know a friend uses olive oil on her kid's cradle cap. She suggested putting olive oil on the scabs before going to bed and washing/rinsing it out in the morning. I'm not sure if this will help or hinder the situation. There are sections that are thinned/gone from this and I do not want to lose the whole area!
Also I have my next chemo on this Thursday. I'm thinking of putting some gauze on the area since it is not completely healed.
Anyone have words of wisdom or advice on this?
And lastly- any advice on working with Jessie? She totally ignores my emails- I have been begging for a basic receipt so I can submit it to my insurance. The caps are a significant chunk of change and I need to get my paper work submitted. I also had to beg for weeks to get the brochures. I'm impressed with the caps (other then the frostbite) but not with the customer service from Jessie.Thanks,
Janine
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Hi Janine~
I'm sorry I cannot help with the scab issue but I am sure there are some ladies on here that can.
As far as the paperwork goes, I had to really pester for some receipt to give to insurance. I finally got one and am waiting to hear from my insurance. Sure hope you are able to get your info. soon...
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Ginacolada,
You can buy the Elasto Gel Caps outright. No rental fee. cost is $90/cap.
They stay cold for approx 30minutes, so you need to check with your Dr. -as to how long your treatment will be, then add 15 minutes before and 15 after treatment.
Regarding dry ice- I got mine at the local 31 Flavors Icecream Store. They always have it.
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