Cold Caps Users Past and Present, to Save Hair
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brax, I'm sorry you are on this journey but congratulations on finding out about PCCs. If you PM me with your email address I can send you my extensive writeup about my experience and the protocol, how to arrange the ice in the cooler, everything. I had a shorter treatment protocol than you, and there are many variables including your age, condition of your hair, overall health especially your liver function, etc. Most women shed hair all over and many PCC users report that they lose a little more at the nape of the neck and around/above one or both ears, warm areas of the head where the caps don't fit quite as well (everyone's head is individually shaped, so you use the extra straps/bands to customize the cap and really press it down to your head where needed). It's really important to knead the cap while it's on your head, after it's been on for about 1 minute and again 5 minutes later. I kneaded constantly, always pressing down to make sure the cold was right on my scalp.
Most ACT users experience more hair loss than TC users, but it varies. Adriamycin is hard on your system including liver. But one thing most cap users find is that any hair you shed will start regrowing during chemo, because cold stimulates hair growth. I finished chemo with 2" of new hair growth.
Coincidentally, when I logged on this morning I was looking at this list from 2 years ago when I joined, just a handful of folks on the list then. Joansf had just completed 12 rounds of taxotere; I inherited my caps from her, and I can tell you she had a full head of gorgeous hair. She shed very little. Her physician had recommended the caps to her, btw.
This list is a fantastic resource, especially if you are the first user at your cancer center like I was. Nobody at my center had seen anything but chemo patients losing all their hair. I found incredible support and advice here. Yesterday I had an appt. with my primary doc, and at the end of the appointment he said I'd inspired him and that he'd learned so much from me going through my treatment, esp. in using PCCs. He has a stack of brochures to give to patients.
Btw, I used 100# of dry ice pellets - I4 caps in 3 coolers - I probably only needed 70-80# but the pellets came in 50# bags. The price was about $60/bag (AirGas in Richmond CA). They were open 24 hours/day so I could pick the ice up at midnight the night before and get the caps arranged for my early morning infusion. It's very easy to use 8 caps and recycle them through the day: just number them as you put them back in the dry ice; by the time you need them again they'll be plenty cold enough. If the Rapunzel Project can donate a freezer to your center, even better! Far more convenient and less expensive to you also because no dry ice (though most freezer users recommend having a little dry ice as a backup incase there is a glitch with the freezer at the center, and/or for the ride home unless you stay at the center for the 4 hours after infusion).
ali68: I did not have a port, and my nurses advised that I have lots of salty things like broth and pretzels the day before my infusion, to plump up my veins. It worked well for me, even at the end.
Susan
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Hi all, I just figured out how to make my Facebook photos for my PCC album public. You should be able to view my PCC photos at http://www.facebook.com/media/set/?set=a.102992449790904.6332.100002404474878&type=1&l=d97c5ccbfe
This should work even if you aren't on Facebook.
Cheers,
Susan
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I have been away for a while. Just needed some cancer free time. It is 4 1/2 months since my last TC and today for the first time I washed my hair in the shower with warmer water and then blow dried it. It felt tremendous!!! Here is a picture of me now with almost all my hair. I hope this is encouraging to all of you starting out on this journey and to all of you experiencing the shedding post chemo. That was when I lost the most and I was pretty scared at first but it does stop after about 4-5 months and at the end you will be thankful that you used the PCCs. So here is the picture if I can figure out how to do it...
well I can't figure out how to make it any smaller so I'm a little embarassed at the size but I want to instill hope into all of you so here it is...
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ok so that didn't work. It worked when I typed it in. I will just change my profile picture.
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just checking in girls, I'm 4 months Post chemo. Hair is growing like crazy, 2 inches where i was completely bald. Ladies remember this, even if you do loose the cold caps will help your hair grow faster and healthier.
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Momof4girls - you look fabulous!!!! I am glad you enjoyed warm water too!
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Thanks for the words of support from my first post the other day.
Brax, I plan to either tell the ice place I need the dry ice for chemo and see if I get a discount or price around for the next time. It hurt too much to pay $200.
Ali, Sorry for your long day. You must have been exhausted. I was told to drink fluids the day before and the morning going in to plump up veins. My iv was on wheels so I kept rolling it to the bathroom.
I brought an electric blanket but it had to be checked first as it was an electrical item. I got it back before long and got permission. It was so nice to keep it turned on high all day!
I've been giving my hair a cool rinse in the shower everyday. Hopefully thats ok,
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LeesaAnn,
My treatment start date is unknown-possibly in two weeks? You look great-beautiful hair!
Sebm9,
Thanks for all the info. I will PM you, very interested in knowing more about your experience. As far as my center accepting a freezer...don't think there is a chance of that happening. They said I can use the caps and when I asked if they had a freezer, I was told no because the caps don't work.
Diagnosis: IDC, 2cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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brax, I am using PCCs, and I just finished round 2 TC. My local Airgas distributor sells us the dry ice slabs, and when the owner found out that what we were using it for, he gave us a considerable discount. I would suggest giving them a "heads up" (pun intended) that you're using them for chemotherapy. I am paying about 25% less than retail for the ice. Good luck!
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brax, Did you talk to Frank about the success rate on your chemo regimen?
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Or Gerilyn?
Also, as far as the freezer goes, I had to be very persistant to get my center to accept it. They told me it would basically be "my" freezer and I had to add it to my insurance, which was no big deal, just a phone call.
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ckk,
Thank you for the air gas tip, there is a place fairly close.
Laura5,
I was not sure how to get in touch w/ Frank. I would definitely feel better about making the decision after talking with him.
What will happen with the freezer when your treatment is complete? Do you think they will keep it when they see your success?
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Hello all, I'm new to the website and will be receiving my PCC's tomorrow. My first treatment is the 19th, so I get a couple of days to practice. One of the questions I have for you past users is how chilled did you guys get during the treatment? Were you wearing heavy jackets, sweaters? Any helpful advise for a newbie would be welcome. Thanks.
Jil
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Brax, I am having my fourth and final TCH tomorrow and I would say I have 95 percent of my hair. I can't quite believe it actually - every so often I'll be doing something and stop to think "would I be doing this if I was bald? No way." I'm temperamentally one who would hide from the world until my hair grew back - couldn't do the wig or scarf thing. In truth, there is a better than even chance I would have turned down chemo had the Penguin Cold Caps not been an option. I firmly believe that the Penguin Cold Cap technology will literally save lives and that is borders on malpractice to fail to offer and support their use - those hostile oncologists and chemo nurses are literally killing women in my view. (I'm trying to remember to spell out Penguin Cold Cap every time as I think that helps with Google links?)
I think I'm lucky to have the type of hair - thin and very, very fine - and chemo - TC - best suited to work. However, knowing what I know now, I would use the Penguin Cold Caps even if I knew for a fact that I would still lose all my hair because I'm persuaded that the Penguin Cold Caps protect the follicles and regrowth would be more rapid and, most importantly, certain. Some percentage of women have little or no regrowth after taxotere - bald for life. That is reason enough to insist in the right to use the Penguin Cold Cap in my opinion.
Please talk to Frank and/or Geralyn before making a final decision.
My dry ice vendor, Emergency Ice in Dallas, sells me the ice at an 80 per cent discount - $125 worth of ice for $25. And she hugs me and tells me she is praying for me every time. They sell to a woman who has been using caps weekly for a year, so it must be doable.
Perhaps if those of us who have been blessed to get our ice at a discount will all post the names of our vendors it will give the new users leverage with their local sellers- "look at all these companies across the country that give steep discounts to chemo patients!"
I remember vividly the panic mode I was in at the point where you are. Not fun but the days do pass.
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Hey ladies....her is an updated photo of my hair today...I finished chemo the first week of May. Yes, I got a lot of length cut off, but I am enjoying my new, shorter hair style and I am loving the fact that my hair is still there and really feeling healthy! I just wanted to share to give those of you just starting out something to hold on to! I did TCx4. I have more photos on my blog FYI.
As far as staying warm, I invested in a twin size electric blanket to wear during chemo. I also dressed in layers. I stayed warm and I am someone who was always cold (before the hot flashes from chemo and tamoxifen) and HATED to be cold. I was really worried about tolerating the cold and it was not a problem for me. You can do it ladies!
I am also like the Lady Gray...I would have hid from the world until I looked "normal" again with hair. Using cold caps allowed me to continue doing normal things. How would I have gone to the gym every day through chemo with a wig or bald? Some people can do it but I am not sure I would have. I also remember going to a lunch at my son's preschool for Mother's Day last year and feeling normal like the other moms....no one looked at me with pity. I also went to his preschool class for story day and read a story to the class after my 3rd chemo. I would not have been able to get in front of a room of preschoolers bald to read that book. My son was so excited I was there and read the story to his class. I found great joy in that moment and was thankful for PCC's. I also returned to teaching aerobics a few weeks post chemo and my class never knew I had BC. I never told them. I too wish the oncology community would understand that there is a mind body connection. I think if you feel better about yourself and do more during chemo it helps you have less side effects and you are able to live a more normal life. I admire the women that could go bald proudly, it was just something I could not do. Each of us has to process this in a different way and it would be nice if people were offered a choice of PCC's just like they are their other treatment options. Maybe one day we can get there. I have decided to post more on my blog regarding PCC's to continue to share success and my experience in hopes that it helps other women going through this.
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Jil, after my first treatment, I bought a small heated throw at Bed, Bath & Beyond - made a HUGE difference - I ice my toes and fingers and chew on ice before and during Taxotere and was shivering uncontrollably.
The second thing I did differently the second time was to take a leftover Vicoden an hour before the first cap - the firstc couple really hurt!
Eat something with protien before you go -I like fried eggs. It is a long day and I find it very hard to eat during treatments. I've found it helps with nausea to keep something in my stomach all the time.0 -
BRAX, The chemo facility said they would let me know what they wanted done with the freezer when my treatment ended. My treatment is finished and at first they said they didn't want it, still worried about liability, blah, blah, blah. I told the manager (who was very helpful in letting me put it there) that I would let Rapunzel know that I would not be needing it anymore, but that I couldn't believe they wouldn't want to keep it, and that I was very disappointed that they would not want to help other women in this way. The manager talked to her boss and they decided to keep it. They will tell any other user to put it on their own insurance. If you decide to ask your facility about a freezer, I can let you know the contact person at my facility in case they would like to speak to her. I had great success with Penguin Cold Caps. My hair looks the same as when I started. I will PM you with Frank's number.
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mdg, Your hair looks fantastic!
theladygrey, I would also have been a hider. I even told my work that if the caps didn't work, they wouldn't see me until I had hair again. Thank goodness they worked!
jil1, I didn't get cold even with the caps during pre-meds, but once they started the chemo, I sure did. The facility had warm blankets so my helpers just kept grabbing warm ones every so often. It wasn't bad at all.
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Hi All! I just discovered that there is a 'shop' here on bc.org where they sell bookmarks with the website address on them. I am always telling people how great this website is, and wished I had something to give to them. Now I do!!! Let's all distribute these at our support groups, oncologists offices etc. We'll get the information out-they can't stop us now!!! https://secure3.convio.net/bco/site/Ecommerce/857531104?store_id=14210
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Hi all~
I don't know about the stores in your area but we got our dry ice at the neighborhood Safeway store and when we told the manager what it was for he gave us a great discount each time...
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I am too computer illiterate to upload a picture of my hair, but honest to goodness no one would EVER wonder.
There are patches over my ears that are totally bald that my husband - the King of Penguin Cold Caps - likes to show people (after checking with me to be sure it is OK) to prove Penguin Cold Caps work. I am actually kind of glad for those bald spots as I am not sure either he or I would have TRULY believed that "but for" I would be bald today. My first treatment was November 16 and I have zero regrowth in those areas or anywhere else as far as I know.
I have followed every rule except I wear my hair in a loose pony tail except for the two days after hair washing day - nothing else to do with this stringy, dirty dirty blond and grey rooted, bangs over my eyes mess! I thought the roots would be a HUGE issue with me but I'm just so damn grateful to have my hair I'm not bothered. I already have a cut/color/champaign party mapped out for the summer with my hair dresser and some friends. Between now and then I guess I'll get to find out what color my hair really is!
I have to say I truly do have the greatest respect for the multitude of women who didn't or don't have the Penguin Cold Cap option -- and to me it is all about options. I HATE it that there are women who aren't offered this option or for whom this option is financially out of reach. Both excuses are equally indefensible.
I'm going to get some brochures and take them to my gynecologist, my internist, and my hair salon - I'm going to drop a few at every hair salon around until I run out because I first cried about losing my hair with my hair dresserwho said she would help me with my wigs - cried even harder. I bet I'm not alone!0 -
Hi Jil, I can send you my writeup of my experience if you like; please PM me your email. I found the first five minutes of the cap to be a kind of "brain freeze" like when you drink a slurpee too fast (but a little more intense) but after that, the nerve endings are frozen. I had an overall sensation of cold and by the end of the day had the "shivers", so take a warm blanket or electric blanket, and dress in warm layers. I went through my chemo in summer in California but wore a cami, corduroy shirt, fleeze jacket, and warm blanket/shawl and warm socks throughout each infusion, and a parka on top of that when outside doing my last cap change!
Even without caps, people are cold when having infusions -- the meds are room temp, which is a good 20+ degrees cooler than your blood and body temp, so you'd feel cold anyway. (So it's not all the fault of the caps.) I iced my fingers and toes to prevent neuropathy, per my nurses, which made it even colder. But it was worth it.
mdg: you look fantastic! Congratulations, especially on feeling fantastic! Luckily, there are lots of cancer centers where the mind/body connection is first and foremost. I am grateful to have landed in such a center with a fantastic integrative approach including acupuncture, Qi Jong, nutrition, yoga, meditation, and massage. Acupuncture, especially, remains key as I go through additional steps in my adjuvant treatment.
Best,
Susan
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Ladies, since I have gone public on my blog about using cold caps and posted pictures, I would like to write more about cold caps to help other women connect with someone that has used them. I want to help get the word out there and why not do that through my blog? I was curious if anyone else would be interested in sharing photos and their experience with using PCCs? If so, PM me and I will give you my email so we can chat.
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Laura5, TheLadyGrey, mdg & sebm thanks for the info on keeping warm and other tips for my first treatment on the 19th. It's so great to hear from you guys that have been through it, and your hair does look great mdg!. That definitely makes me feel better, and I'm going to check out your blog. Also, thanks Susan for sending me your info from before. I had contacted you last week via email about your cold cap experience and you sent me all kinds of info, as well as the link to this discussion thread. Thanks again!
Jil
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mdg, Great way to spread the word. I will find a pic and pm you.
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mdg~
Count me in also.
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Awesome ladies!!!! I will PM you my email address!!! I like it!
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I colored my hair at the salon today. I am 4 months post pcc and did a combination of highlights and low lights. My hair is close to my natural dark blond color. He framed my face with highlights and the back is a bit darker. I bought new clip in extensions to match my new color. I was very very blond before chemo and wished I colored my hair back to natural color before doing the caps. I don't have to wear a hat to hide my roots! I will go blonder next visit. Most of the hair I lost was around my face and hairline. I am so gald I used the caps.
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Ladies, I'm planning on pursuing reimbursement for all Penguin Cold Cap expenses from my insurance company. My background as a trial lawyer may be useful.
I am interested in setting a precedent here and am wondering what outcomes people have had filing for reimbursement and the specifics of the policy/reasoning.
I doubt I will ever get anything but I'll appeal it all the way through Blue Cross because I can -maybe the next insured will have better luck if the agent isn't thinking "what a scam!"
I find it appalling that the decision to save one's hair can come down to $$$ when wigs are covered expenses.0 -
I have a question ladies....I'm so encouraged by your results! I will be definitely using these...my tx don't start until 6-8weeks after my mastectomy next week. How soon should I order the caps?
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