Cold Caps Users Past and Present, to Save Hair
Comments
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Oprah has such an influence. Hopefully her featuring the caps will open the eyes of more doctors and patients to the fact that it is possible to keep your hair during chemo. Wish it would have happened while she had the TV show, but later is better than never. I must find a copy of the magazine.
If anyone in the San Francisco area needs help with caps, I'd be happy to help. Being there physically with the caps, or just talking through the tough days, I think it's important to give back. Keeping my hair was such a gift.
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tvaliente, I would ask Frank from Penguin Cold Caps. The website is: www.msc-worldwide.com.
Most of us were not told about the caps either, we just happened to stumble across them on the internet. It is maddening that more doctors either don't know about cold cap therapy, or just don't bother to tell their patients about it.
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For those of you who have asked, I have requested the website and contact info for the person in the Los Angeles area who can be hired to do the Penguin Cold caps. Haven't heard back yet.
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This is my first post and it looks like chemo for me early next week. I left a message in to the Penguin Cold caps company so I'm waiting to hear if they can get me the caps in less than a week. In the meantime I need to arrange for dry ice. Can anyone in the Boston area tell me where they get their dry ice? Also, I'm a little confused on the amount to buy. I'm having TCx4 at the Dana Farber but not sure how long the actual infusion part is. The NP told me expect to be there 4 hrs the first time, but I'm sure the chemo infusion is much shorter (she also said she had 4 patients use the cold caps and still lost much of their hair...still I'd like to try). Thanks for any help you can give.
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I called Geralyn on a Wednesday and hat the caps in Saturday so I know they can get them to you. I'd send her an email with your deadline in the reference, "Must Have By 3/26!!!"
Many of us have had your exact treatment and kept our hair! I finished In January and there is no way anyone would suspect I just completed treatment -- get excited cuz you are about to show that NP!
We used about 80 pounds which was plenty. The vendor sold it to me at cost when I mentioned it was for chemo -- many of them do so be sure to mention it. You will probably be wearing the caps for a total of about 8 hours -- 50 minutes before infusion, during and then 4 hours after. Herceptin is not chemo so that time counts towards your 4 hours - make sure they do Herceptin last.
I know this is all overwhelming right now, but you will get through it with your hair!0 -
slak, I asked my center to give me the length of time for each drug, I was on TCH. You will not have the H (Herceptin) since you are her2-) I am surprised your NP was discouraging about the cold caps, maybe they weren't Penguin Cold Caps. I kept ALL of my hair, except for a tiny place above my ears where the cap did not quite cover. If you cannot get the caps in time, just postpone your first chemo for a week. Rapunzel donated a freezer to my facility, and I postponed my first chemo until it arrived.
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Hi Slak,
I live on the North Shore and got my ice at Cape Pond Ice Co. in Gloucester. They have a place in Lawrence as well and I think there may be a place in Beverly. If you call Cape Pond they should be able to help you. Their # is 978-283-0174. They gave me the commerical rate when I told them it was for chemo. It still wasn't cheap though. I had TCx4 also and used two coolers with about 90-93 lbs. of ice. That is because we had to get it the day before and so allowed for evaporation. We tried to get the coolers packed in the morning 3-4 hrs. before my chemo appt. I kept about 80% of my hair and just finished my last treatment last week. The only thing I would have done differently was to use the thick hair schedule. I did for #'s 2-4 but not the first one. My timing worked almost perfectly by starting the caps at the same time the nurse started the iv with all the premeds. By the time chemo was to start I was putting on the 4th cap and she only had to wait the 10 minutes or so. She was happy to wait as long as needed.
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Slak- I did TC x 4 plus herceptin at the Dana Farber too. I kept 90% of my hair. My husband did the dry ice run in the morning of infusion daysand he got the goods from Acme in Somerville/Cambridge. We live in Harvard Square and there are many dry ice places in the city because of all the biotech places.
I am so glad I did it! They work! Good Luck!
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soccergirl, slak stated the NP at Dana Farber told her "she had 4 patients use the cold caps and still lost much of their hair...". Since you just wrote that you kept 90% of your hair, I think you should be a little perturbed that your success is not being truthfully represented.0
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Thanks everyone for all your help!!!! I am so glad it worked for so many women, and I am optimistic it will work for me. Please don't think that the Dana Farber is against using cold caps...I think it was just this one NP's view and in my stressful state, I might have not understood her right. I have a great Oncologist there, and have gotten excellent care, so no complaints in that regard. But the info and support on this site is priceless!!
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Two years ago, at this exact hour after learning I'd need to go through chemo and hoping for any wild idea so I wouldn't lose my hair, I first stumbled across Penguin Cold Caps. Two years ago, at this exact hour after learning about Penguin Cold Caps, I decided my battle against cancer was a journey of living, not one of not-dying. It was one of the worst days of my life and became one of my greatest victories. Life is good.
This seems like the best group of women to celebrate with!
Cheers,
Susan
p.s. slak: please PM me with your email address and I'll send you my writeup about the caps, it is quite detailed and I also used the dry ice method. (I'll send this to anybody who sends me their email.) It is fine for you to postpone your first treatment until you have arranged the caps, the coolers, the gear, etc. It is worth it! You will shed some hair but the caps are especially effective with TC treatments -- I had TCx4@3 and kept my hair; my writeup includes links to my photo journey. (Your nurse may have had users with other chemos, such as ACT, where there is usually more hair loss, but there are many variables including condition of hair and whether it is healthy or has been chemically processed much, liver function, etc.)
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Soccergirl, I have questions about how it works at the Dana Farber...is there semi-private space for each chair to do this? Did you put on the first cap the same time as Marie3 did (when the pre-infusion was starting)? Did you bring both coolers up into the waiting room and wait to be called in for the infusion? Sorry for all the detailed questions, but it will help me to remain calm if I feel prepared.
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Cheers to you Susan!
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Thanks, Ang7! Could not have done it without you and all the other women on the list!
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Slack I used a semi private room. I waited with the coolers and all our junk in the waiting room. It all worked out. The first time is nerve racking!
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Yay Susan!
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Susan! Hooray!!....
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Has anyone in the Orlando area used the COld Caps?
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Hello everyone, i have finished 4 TCH treatments now and still have about 90 % of my hair. Except for a bald spot directly at the front of my hair where my bangs begin. I believe it was too cold in that spot during our first treatment and my husband pulled the black strap too tight on the same spot that first day.
As anyone had this happen? Does it grow back? I have two more treatments to go.0 -
P.s. I am using Penguin Cold Caps.
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Many of us lost hair in some areas. For me it's like I lost a little all around my hair line. It was not noticeable to anyone at all. I finished chemo last May and now I have bangs and about 4 inches of hair growth in all of those areas (nape of neck, side burn area and temples). It should grow back. I didn't realize how much hair I had lost until it came growing in.....then I was in shock!
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Congrats Susan! Thanks so much for being a wonderful resource for all of us that have come after you. You are truly a blessing!
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Hi Dgreg, That didn't happen to me personally, but it happened to the woman who I co-shared caps with towards the end of my treatment/start of hers (she used to be on the list but hasn't been here in quite a while). She had thin hair and got a little patch of frostbite front and center near her part. She had a bald spot briefly but the hair began growing very quickly because cold stimulates hair growth. When she finished her chemo regime it had pretty much grown back, just a wee bit shorter than her other hair (which had grown tremendously throughout chemo).
Honestly, if all of these old bald medoncs knew this I betcha they wouldn't get their knickers in a twist about using cold caps. (Sorry, editorial over.)
I believe she placed a piece of gauze on that spot for subsequent treatments to prevent any skin damage and all was fine.
It's a good idea to toussle your part (if you have one) between each cap change. The part is usually where there is the most skin exposed, so cover it with a little layer of hair. I looked pretty freaky between cap changes -- glad no pictures were taken at those moments! but I had no extra hair loss at the part. We weren't instructed to do that, we just instinctively did it and it worked.
A reminder: if you are using caps and feel a cold, burning sensation on a part of your scalp: stop, take the cap off, and put a piece of gauze or thin piece of silk or something (gauze is readily available in an oncology room) to protect your scalp. The PCCs are designed so that the temp hovers just above the frostbite line, but everybody is individual so you must monitor.
Thanks everybody for the support and kind words and hurrahs; you too will be here sooner than you think! I can't believe that for so many years women in the US could have had this option but the medical establishment denied us. I am determined to change this. Women should not have to suffer with the BC diagnosis, and then suffer again with the devastating (and largley preventable) SE of alopecia from chemo. I can't believe how lucky I am to have stumbled across this information in time. I won't rest until every woman knows she has this choice.
Susan
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Amen to that Susan...
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Thank you for your reply and better tips how to proceed forward. I will def use some gauze to cover the bald spot because it really burns when i put the cap on. The rest of my hair has grown lke crazy. I am beginning to use a cool blow dryer on it now. Before i was afraid to as much as touch it afraid it would fall out, but not fixing it at all has been what i do but Frank said i could use a cool dryer.
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Hey all...just doing a little bit of research...the costs are pretty high if you have to rent on your own - by my calculations, for 4 months of caps, it will be $2000 plus shipping, tax, etc. plus the cost for dry ice. Am I correct? Or is there some type of cheaper way to get around this? Need to know. I'm contemplating if whether retaining my hair is worth that much money to me. I know it is a personal decision, but I need to know the facts before I can decide!
(I'll be getting 6 TCH, so 18 weeks which is just over a 4 month time period.)
I already called my infusion center, and they do not have the cold cap system.
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dancetrancer, I also recieved TCH x 6 every three weeks, which works well with cold cap therapy. I was only billed for a portion of the monthly amount for the last month, so I assume they give a break for those of us who have 6 treatments versus 4. I did not have to purchase the dry ice, I received a donated freezer from a non profit, founded by a former user, that will donate a freezer to your cancer center. www.rapunzelproject.org
The majority of ladies on this site did use dry ice, and most received substancial discounts from their ice suppliers once they told them what the ice was for.
As you stated, this is a very personal decision. For me it was huge. I looked like myself throughout, and was able to keep my privacy.
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I was told the fourth month and thereafter was $75 , the first three months are the expensive ones! Weekly treatments using dry ice, even discounted adds up fast too!
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Thanks guys! I have a call into the cold cap company and my onc to see if I can make this work. Fingers crossed...
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I have my second TCH Friday. I feel pretty relaxed about it. I have not lost a single strand of hair on my head but don't know when that should happen exactly. When I was supposed to get ACT they said I would have no hair on the 15th day, but I know TC takes longer. I'm wondering if I should switch to the thick hair regimen. I actually have fine hair, but lots and lots of it. Whenever I would go somewhere new to get my hair cut, they would always say you have so much hair that it looks thick, but you actually have really fine hair.
Regarding the order of my infusion, the nurse called me back and said that they would not change the order of the herceptin because they are following the protocol used in the trials. It made me so mad and they really took their time getting back to me. It was like they were saying we are doing it the right way, which just made me even more angry! I was going to contact the patient advocate but from what I gathered that is the nurse navigator, and I'm not sure that would be helpful. I have other beefs there too, so I have decided to eat this and keep icing hands, feet, and mouth (as it seems they may have issues with this too).
Dancetrancer...I am paying a little under a dollar a pound with the discount. I may of been able to do better if I would have shopped longer. KCD is right about a discount on caps after 3rd month-don't remember the exact amount Geralyn told me but it is substantial. Shipping charges were much less than I thought they would be with fedx ground (much less than the ice). I may have delayed a week if I would have had to pay air shipping. It was stressful getting it all together, but I'm so so glad I did.
Susan...Congrats!!!
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