Cold Caps Users Past and Present, to Save Hair
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Brax, I'm sorry about you're experience at you're first chemo. Just what you needed was added stress! I live in South Florida and I have been running outside during chemo. I usually just rinse my hair in cool water after running, but if it's pretty hot out, I wet my hair before. I have had 3 chemo treatments and have had some shedding, but far so good. Good luck!
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brax, That is ridiculous. I would have a good talk with the office manager or whomever has authority. I counted the time I was given Herceptin as part of the 4 hours post chemo cap time. Did you run out of caps then? Do you know how much money these facilities make on just one chemo patient? I would tell them that if they can't help you do the things you need to do to make sure the caps work, that you can find a center that would be glad to accommodate. My center had never heard of the caps either, and I can't say my chemo nurse was a fan, but we told her the timing was crucial and she always got the chemo started when we needed her too.0
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Can anyone please tell me how to insert a picture? I've clicked on the little tree, and I don't know how to fill out the boxes. Thanks!
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Prior to my first chemo I sent a letter outlining my expectations from the infusion staff and politely requested that they let me know if they were unwilling to accomodate me so that I could arrange to move my treatment to a different treatment center. My oncologist loved the email.
Summed up, my expectation was that the chemo nurses would not make it harder than it needed to be. I didn't expect them to DO anything -- just stay out of the way of my Cold Cap team. The nurses were always cooperative -- asked when we wanted them to start chemo, etc.
Here is what we did timing wise which is a little different from the recommendations but worked well.
It didn't take long to figure out that they did NOT want me sitting out in that waiting room with a Cold Cap on, so we put one on a few minutes after we got there. We were always called back within 15 minutes. By the time we got all situated I was generally on the third cap 20/20/20 minutes. Regardless of how long the last one had been on, we put on a fresh cap when they started the pre-meds which ran 10 minutes or so. That way, the nurse had to wait at most just a couple of minutes before the cap had been on for the requisite 20 minutes. That would then be the first cap I kept on for 30 minutes.
I know other women at my center have met with resistance from the chemo nurses both before and after my treatment. I do believe that writing that email setting forth my expectations made a difference. That, and I was totally prepared to move my treatment had they been unpleasant. Bottom line, no Cold Cap, no chemo.
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I had a funny thing happen at my gyno's office on Friday. The assisant was reviewing my medical history with me and kept wanting to move my BC back in time -- she'd look at me, then at her monitor and say "wait, you had BC in 2007 and this says 2011." Nope -- just finished chemo in January. "You mean this last January or January 2011?" I mean I finished my TCH six weeks ago. TCH. My eyebrows are about gone now.
I finally took pity on her and explained the Cold Caps. She could NOT figure out how those dates could be right with a full head of hair. She had worked in an oncology center in another city a few years earlier and the first thing she said was "but cold caps don't work." Well, exhibit "A" sitting right in front of you proves they do!
I think it is so weird how unexcited medical people -- especially women -- are about this. She had hair halfway down her back -- you would think they would at least show a little spark of excitement. Sure, no one thinks breast cancer is in their future but knowing that if they come down on the wrong side of the stats they have the choice to keep their hair I would think would elicit at least a smile. One of the reasons I think it is so weird that chemo nurses aren't more supportive -- they all have hair.
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Never mind - it looks like somehow the picture got posted. This is 3/4/12, Day 20 after 1st chemo.
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I'm so sad reading about the negative experiences that some of you have had with your infusion centers and the caps. I was very lucky- my chemo nurses were incredibly accommodating and helpful, at times delaying the start of the first drug until the exact right time for me. As time went on, they got more and more excited as they saw me keeping my hair. I know that my success became the talk of the center, as by the 4th round, I had a crowd of nurses coming by to check out the caps and ask questions. Their kindness made a huge difference.
Perhaps a letter to the head nurse in the chemo infusion center, copied to the MO, would make a difference to all of you having trouble. It's a shame that they are making a negative impact on those they have pledged to care for.
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This picture is today, 3/4/12, Day 20 after 1st chemo, taxotere and cytoxin. I really wanted to go into my 2nd chemo with healthy looking hair, but it was just looking flat and thin, and started shedding 2 days ago. I have a frostbite scab, about one and one-half inches diameter, at the front center of my scalp which was making the front stick out weird, and washing once a week was leaving most of the days with flat hair, white roots that were making it look thin, and a couple of baldish areas by the frostbite scab very obvious. I saw that many of you rinse your hair with cool water, without using shampoo, in between shampoos, so I tried that today, used plenty of the Kenra leave in spray conditioner, gently combed it out with a pic, holding the longer areas like a ponytail so not to put any pressure at the root. It still seemed to me that it shed a ton. I decided to go ahead and use my blow dryer, with a large diffuser resting very gently on my scalp, on the lowest, coolest setting, while also holding down the "cold" button, and hholding my heal upside down. I didn't move the diffuser until that area was dry, so it wouldn't be "pulling" or "combing" any hair. I just lifted the dryer straight off the hair, turned it off, moved it to another area, and turned it back on. I'm pleased with the result and I think I had less shedding drying my hair this way than just letting it air dry, and having the weight of the wet hair pull against the scalp while it's drying. I'm excited for my 2nd chemo tomorrow to show a skeptical staff "proof" that PCC works. I'm a former ICU nurse, and my chemo nurse last time told me she worked at a hospital in the 80's, that used cold caps and dry ice, and out of about 50 women using them, it only worked 1 time, and that there were several mets to the scalp. Her hospital just happens to be the same hospital I worked at, at the same time. We were just on different units and didn't know each other. I remember hearing the stories about this back in the 80's. Since the PCC website says Frank started using the caps in 1994, obviously these were not the same caps, and also obviously, with PCC results, different materials and different protocols were used by a different company in the 80's.
I also brought gloves, socks and ziplock baggies, and iced my fingernails and toenails, during chemo, and they feel and look fine.
I'm very pleased with the personal attention from Geralyn, who also talked to Frank about my frostbite. They've recommended combing all my hair back so there's no part at the side or at the bangs, and also to protect the thinner areas and frostbite area with gauze, and to increase the caps temp from - 33 to - 32, and if that still hurts after 5 min., to go to - 31. My hair is much thinner at the hairline until it gets a little over an inch from my forehead. My sides are thin, but my crown and back are medium to thick. I also have an unusual "redhead skin syndrome", where my skin takes much longer than normal to heal after any surgeries, along with feeling like I've been horribly sunburned for several inches around any incisions, with no redness or skin appearance change. Even a kleenex brushing against that area feels like sandpaper. It's hard to describe to a doctor since it doesn't look like there's anything wrong. Thankfully, with 4 surgeries in 4 months, the doctors have all believed me and prescribed enough pain meds to make this tolerable until it goes away in a few months. So I'm not surprised that there's some frostbite that's taking a long time to heal. But there's hair under and through the scab, so I know it'll be ok, and the "baldish" areas already have stubble (altho it's white and still looks bald). When the frostbite was leaking the first week after chemo, I didn't tell any doctors since I didn't want anyone telling me I had to stop using the caps. I just used organic aloe. Since now there's a black scab, I did show my plastic surgeon and he said the frostbite area is not infected (I'm already on antibiotics due to a little unexpected surgery last week when the temporary tissue expander became infected when my counts dropped quite low) , and to just leave it alone and let it heal. He said if it leaks again, to use the same antibiotic ointment I was using at my drain insertion area from the surgery. But it hasn't leaked since the beginning of the 2nd week.
In agreement with what The Gray Lady wrote at the end of her post, some very well-meaning people have said to me "it's only hair, it'll grow back". I asked the men to ask their wives and daughters how they'd feel, and asked the women to think, really think, if it were happening to them, how they'd really feel. You never know how you might react to something until it begins to happen to you or someone you love. I have many angels in my life, most of all my husband, and also many blessings.
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I agree.
Many people I know act like they would be fine with it if they lost their hair.
Why do so many say "it's only hair" yet cancer patients are encouraged to wear wigs?
It appears to me that many are uncomfortable with the bald image and just won't admit it.
Penguin Cold Caps gave me an inner strength that I did not even realize I had.
I am grateful for them and for you all.
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Brax: I exercised 5 days a week all through chemo. I did not pour any cold water over my head. I simply kept blotting sweat forming around my hairline and I wore my hair in a ponytail when I exercised or clipped it up. I am not suggesting you do this...just telling you what I did. There are photos on my blog of my hair before, during and after chemo. I was successful keeping my hair.
As far as scalp frost bite...I did not get any. I did change my part to a different position every time I changed my caps. I did lose quite a bit of hair around hairline and around where my normal part is. Now 10 mo's post chemo, the hair is growing in there and is about 4 inches long! I find sections that are 4 inches long and I really had no idea I had lost so much hair there. Keep going with the caps.....the hair where you have lost it will fill in quickly and it won't be noticeable. I know it seems scary...but have faith - the caps work!
I also did not get much encouragement or support from staff on using the caps and my Med Onc office had a freezer and caps on site. They could care less...they accomodated me in terms of the timing of meds, but offered no encouragment or excitment that I kept my hair. They kept saying "you know, don't get your hopes up...the caps don't work for most people". Hard for me to hear this when they have the caps in their office. They almost discouraged me. I hate that people don't "get it" or give a crap. I was able to live a "normal" life through chemo because of cold caps. I have been able to move on with my life quicker because of cold caps. I have spared my 5 year old son from seeing "sick Mommy" and have prevented him from having memories of his mom bald. Cold caps were worth the effort for me. My med onc said "you don't look or act like any of my patients". I said "it's because of the cold caps and exercise....I feel normal and can look normal eventhough things are NOT normal and that makes a huge difference!!!!". When we moved recently and I got a new med onc...he never even asked how I had hair 6 mo's post chemo. He could care less.....his PA asked me if I thought cold caps worked as she looked at me and my full head of hair...it was ridiculous!!!
I will keep spreading the word. If anyone else that had success would want to share their story - I will post it on my blog. I put my photos and info out there to help others see the success for themselves. There is so little information out there on cold caps. If you are interested - PM me and I will give you my email. I want to help other women have hope when it seems like there isn't any.....
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Hi Carolsk54, I saw you iced your hands and feet I did too. I also chewed ice. I think it may have worked since I still have taste 3 days later and the nurse said taste cold be effected the first evening of chemo. Good luck today!!!
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Hi Ali, I am so glad I found this board before actually doing cold caps. I'm afraid that when the shedding would have started (which it hasn't yet) that I would have thought that meant I was going to lose my hair all together and given up on the caps.
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MDG,
Thanks so much for the information. I read lots of your blog and found lot's of helpful info there! I will be searching for aluminum free mascara today and I think I will be buying claritin again- I bought regular and it seems it should have been Claritin D -- hoping it will still work as I have been taking it since Thursday:(. I have not washed my hair since Wednesday -two days before first chemo. So I am thinking the once a week wash should be at least two days from treatment? I am heading out for shampoo's and hopefully conditioner. I saw lots of people used Kenra the leave in, I will have to check if that detangles as well. I am wondering if it is safe to use conditioner during rinse days to help with tangling unless Kenra helps with that. Just when I think I've asked everything I thought I could ask I come up with ten more questions!
*I get treatment every three weeks -I put weekly above.
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If I recall correctly, you should refrain from washing three days before and three days after chemo. My hair (and everything else) got so dry that washing once a week shortly became a non-issue. I put conditioner on my hair from the nape of my neck down.
Whole Foods has a very reasonably priced paraben and sulfate free shampoo and conditioner. I haven't tried it yet - bought it for my daughter as I'm trying to get her focused on using safe products. The products I bought were $25/tube at Ulta (!) - all I could find at the time. When you are only washing once a week with a tiny bit of shampoo it lasts forever. I imagine they could help with the leave in conditioner. That is also where I got the biotin supplement that is supposed to help hair and nails. I don't know if it works but it doesn't make me sick to my stomach like most vitamins.
To all of you who are using the caps, PLEASE don't panic when you have shedding. Carry on with the program - you are not going to lose all your hair. Expect to lose it over your ears - I think everyone loses a silver dollar sized patch there - and maybe around the edges (I didn't but many do).
I'm still having significant (for me) shedding at 8 weeks PFC - more so than during chemo. Doesn't bother me at all.
Keep the faith!0 -
The penquin site says to refrain from washing 48 hours outside of chemo
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Got a great scarf today as I'm fed up with my wig. My hair is still holding out so wrapping the scarf like a Alice band looks great. Next chemo is on 16th number 4.
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I washed my hair yesterday and found the Kenra leave-in conditioner. You spray it on. I don't know why, but I thought it was cream conditioner. My hair did not turn out so great after the washing. I really needed to use more shampoo. I guess in another week or so it won't matter as much, as I imagine I will be drying out.
Ali: Whenever I see a woman with a scarf I always think how creative and talented she must be!
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KCD, there is conflicting info from Penguin on a few things, including the hair washing post chemo timing. When I asked Geralyn, she said to wait 3 days, not 2. I have to tell you that I asked after I had already had 3 rounds and was washing after 2 days. I still have all of my hair. YMMV.
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When I first started washing my hair I used ph balanced shampoo and conditioner. It made my hair dry and I couldn't get a comb through it, I still think that's what killed my hair and had to have it cut short. I now use simple shampoo and my hair is not dry and very good condition.
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Yes, one of the most frustrating things I've found is how much conflicting info there is between the "how to" video on the site, the information booklet that comes with caps, and the info on penguins site. I'm so worried about doing everything RIGHT and many of the details don't line up.
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I am so frustrated. Everything I read about Taxol said it causes hair loss. I am using the caps and have been told twice now by my onc and someone in her office that I wouldn't likely loose my hair with taxol, particulary weekly taxol. It was a long treatment day today, please help me remember why am I going through all of this work on weekly treatments
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I am doing research for my 31-year old daughter recently diagnosed in the Atlanta, GA area. Have you had success with the cold-cap treatments, and is there a difference between Elastogel and Penguin other than price? I have found through research that Penquin cold-caps are more expensive mainly due to S&H charges from the UK. Any feedback would be appreciated. Thanks. KP
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I am so frustrated. Everything I read about Taxol said it causes hair loss. I am using the caps and have been told twice now by my onc and someone in her office that I wouldn't likely loose my hair with taxol, particulary weekly taxol. It was a long treatment day today, please help me remember why am I going through all of this work on weekly treatments
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@KCD- Taxol does cause hair loss. You'll get through it, others have paved the path before you. Make it easier on yourself and take a pain reliever of some sort at least an hour prior to wearing the caps.
@portishk-Don't waste your money on the elastogel caps. I know it seems the better route to go, but don't work well. The only thing I would recommend using them for is hair stimulation post chemo. The Penguin caps are manufactured here in the states and are shipped from Michigan. The inventor/owner lives in the UK.
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I am doing research for my 31 year old daughter who was diagnosed in late Jan. She is trying to decide between the Penguin and the Elastogel cold caps, and her breast surgeon was the person who told her to do the cold-cap treatments. She is currently working with a fertility specialist having treatments and eggs extracted and frozen on March 17th, then begins chemo on March 19th. She told me to research what was available in the Atlanta, GA area. Penguin hasn't returned my calls, but a company called Advance Cold Cap Services uses the Elastogel cold cap which has been used in Europe for 20+ years, and they provide a cooler, the dry ice, 6 caps (that can be cycled multiple times), and delivery and pick-up service for $249 per treatment... as well as an initial $400.00 damage deposit. Have you heard of this company or this type of cold-cap?
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portishk - here's Geralyn's (at PCC) email--- she seems to answer emails more quickly than phone calls: geralyn@talkamerica.net
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portishk, Penguin Cold Caps have a much better success rate. When I needed them last July, it was easy to get in touch with Frank (the inventor) and Geralyn. I know the caps have really caught on and apparently it is now hard to get in touch with them. If I remember correctly, you just order them from the website. There is a member (sebm9)on this thread who has an instructional write up that she will email you if you private message her. There is another member (mdg) who has a link to her blog in her signature. She has written about her experience with the caps that I found very helpful when going through all of this. There is a non profit organization that will donate a biomed freezer to your chemo facility to keep your caps at the proper temperature. (www.rapunzelproject.org) They donated one to mine.
I finished chemo in December and kept all of my hair. I can't tell you how fortunate I feel to have found out about these caps. They are worth every penny.
Kudos to her breast surgeon for telling her about the caps. Most of us here just happened to stumble across them on the internet.
Good luck to your daughter.
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@ Laura5 - thanks for the info... I will private message Sebm9. I wasn't sure if Penguin had a better success rate, or just better marketed. I have several testimonials from people who have used Elastogel, and they were very satisfied as well. Just wondering what the differences were.
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Just a check in ladies, I'm 6 months post chemo
for those who remember, I was part of the study at UCSF for the DigniCap, attached is a picture of me at 4 months PCC, and they consider me unsuccessful as far as the amount fo hair I kept. I'll take it! I still was able to not wear hats and feel normal hopa ll of you are well, I have my mammogram today and am just praying for it to be all clear
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@sebm9 - I am new to this site, and trying to help my daughter in Atlanta who was recently diagnosed. Do you know anything about ELASTOGEL caps vs Penguin? I know that Penguin is more expensive, but can't find as much info about ELASTOGEL online, only that they've been used in UK for over 25 years. I have left messages with Frank at Penguin, but he hasn't returned my calls, and my daughter starts chemo on March 19th. Another lady on here recommended that I email Geralyn, so I'm going to try that. Any feedback would be appreciated. Thanks! ~portishk
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Can anyone please tell me how to insert a picture? I've clicked on the little tree, and I don't know how to fill out the boxes. Thanks!