Cold Caps Users Past and Present, to Save Hair
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Hortense, 301724-Thats wonderful news!!! I believe once oncologists/administrators realize that they are losing money because women are going elsewhere to use the caps they will have a change of heart. Their attitude on cap use will change-like the magnetic polarity of the earth
and the idea will be 'why not use them'? But, we know how reluctant the medical industry has been in embracing scalp cooling with all of its benefits including the wellness of patients. There are so many avenues to get the word out there that haven't been pursued i.e., salons, nurse asso., student journalists etc. It's been an uphill battle but one day our pioneering spirit will bring success for those who follow in our footsteps. Thank you for all you ladies do to make this happen!0 -
Just checking in to say I'm officially done with chemo! Yesterday was my last T/C treatment and my last cold cap - we're packing them up tomorrow and shipping them back. As great as they work, I will be so happy to have my freezer back and never have to put on moleskin, layers and layers of clothes and shiver for 8 hours again!
I will say we had more snafus yesterday than any of the others...Murphy's Law type day...started the first 2 caps then had trouble with the IV so we had to put on a 3rd cap and then a 4th for 10 mins to then start the drug - I think that's the right way to do it so fingers crossed. That delayed things just enough to put us into rush hour traffic coming home so we had to pull over and do a cap change in the car. Very last cap my DH forgot to wipe down so I had a painful spot on the top front that I hope does not turn into frost nip - I put a tiny bit of aloe liquid on it last night and it seems better today. Not red or anything just a bit tender. I was much more hi-maintenance yesterday because I felt it was the last shot let's not screw it up, and I know I was driving my team nuts asking if they were sure the temps were right, etc. LOL, I know they are just as happy as I am to have this behind us!
The picture below is just before we left for the treatment...I'll post a closer up of my hair in a few weeks once I see how it fares for this last round. For now I have to say I love the caps and am so thankful I found them, and all the great ladies who have posted to this board...I've read all 260+ pages of it and it's been a great guide for me to keep the faith!
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Sorry not sure what happened with the picture...any advice on how to post it? I copied and pasted and I did see it before I submitted...
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Dying to see this picture! About to start chemo with Cold Caps and wondering if it will be successful. Maybe you can comment on how your hair faired so far? how did you find the experience of the many, many cap changes. Sounds so stressful. And how did you do with the colllldddd?
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Curly, It will be successful! Just follow protocol. And yes, it will be very chaotic for the first several cap changes, then your helper(s) will get it down. As far as the cold, your scalp will freeze after a few minutes and it is not bad. You will want a warm blanket, but then so does everyone doing chemo. You will be so happy to look like yourself
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Laura, thanks for the pep talk! Can use all I can get! Did you use dry ice? Anyone use dry ice? I am reading about it now - seems scary. Anyone have any tips on success with dry ice?
thanks,
curly
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Curly - good luck. An electric blanket will take care of the cold. It worked for me. Also, Ativan before chemo is something many of us have done to help take the edge off. I also did that. I HATE the cold and I was so worried I would not be able to tolerate the cap. That was my biggest fear but it was not really that hard. That really shocked me. You CAN do this! You will have hair! I did not have to use dry ice so I can't help with that.
Hope - so glad you are done! Can't wait to see you in a few weeks and see your hair!!! Congrats girl....I remember meeting with you before you started and you were so worried...now you are so confident. Funny how the caps can make that happen!
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Thanks MDG! Crossing fingers!
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We are too!!!
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Curly, I used dry ice. I think most women in the US use dry ice as there aren't very many freezers.......yet!
The caps come in plastic containers. Just make sure that all parts of the cap are against the side of the container.
I confess I packed the caps using jumbo plastic bags for the last chemo. You aren't supposed to do that but my husband wasn't there, the friend we asked to help cut the ice was absolutely useless and my sister was doing the caps alone. The first one was way too cold --- I threw up a little bit. My sister got the caps out earlier after that and it worked out fine.
I was absolutely shocked at the pain when my husband put the first cap on -- I was not ready for that. I thought, "this has to get better because no one could tolerate this for 8 hours." I set the timer on my phone for 5 minutes and focused on breathing deeply and evenly. The pain receded before the five minutes were up.
After the first chemo, I took a leftover pain killer when we arrived at the hospital. That helped a lot, but, more importantly, I knew what to expect with the first cap.
I don't want to scare you -- your experience may be different. But know that regardless of how painful it is, it gets much better within 180 seconds.
I HIGHLY recommend an electric blanket. I got one before the second chemo and the difference was HUGE.
I followed the protocol on washing, cutting and coloring. I figured why risk the pain, expense and hassle? Since my hair is naturally blond, I couldn't color my mousy brown and grey roots because all coloring that lightens has peroxide. Honestly, had it grown in a little bit more grey, I would have let it grow out.
Most importantly, DON'T PANIC. The caps work -- just stay the course.0 -
Curly, I did use dry ice..my DH took care of all of that and it worked fine. The caps are very cold in the beginning, but I popped a Xanax and two Tylenol an hour before we started and it did help. I had to kind of close my eyes and just breathe for the first few mins and then it gets much better. Changing the caps made the day fly by. It is a lot of work, but so worth it. If you want to PM me your email, I can send you the picture...can't seem to post it here. You can do it...stick to the instructions and rules and ask any questions here, and you'll do fine!
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On a different note, I found out when I had my bone scan that one of the OB/GYN's in the practice had just finished treatment. The doctor is affiliated with my hospital, obviously practices in a relevant specialty and had never heard of cold caps.
How is that possible?
It cracks me up sometimes how health care people look at me suspiciously when I tell them about the caps -- like they want to tug at my hair or examine my scalp.0 -
Curly, I had a freezer at my facility and didn't have to use dry ice. I hope Penguin provides detailed instructions for using dry ice! I believe dry ice keeps the caps colder than the freezer, and too cold to put on your head immediately. Your helpers will have to "massage" each cap a bit to get it to the right temperature, and you'll have to figure out the timing so that a cap is ready when your 20 or 30 minutes is up and it's time for a cap change. The first few times it will be crazy, but then once you all get the routine it should go smoothly. I'm so glad my facility had a freezer!!!!
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Hi all. I'm new to the forum and in panic mode. MY original diagnosis was DCIS, therefore no chemo. Post surgery, they discovered a small invasive tumor along with the DCIS. It was a shock and my onco score indicates the need for chemo- and soon as I am now 5 weeks post surgery. I met with an oncologist two days ago who never heard of cold caps. I'm wondering if there's anyone out there from the Philadelphia area who has tried them or how I can find someone. I would love to speak to someone in my area who has used the caps and who can direct me to an oncologist and/or hospital who is supportive of the idea of using the caps.
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JC- I did not use cold caps. However, I did talk to the chemo nurses at my treatment center about them. They reported that they had a few women use them over the years. The nurses were neutral about their use and success. I was treated at HUP (Perelman Center). I don't think you will have any trouble being accommodated there. The treatment rooms are large, private and comfortable and the nurses were the best. I did not ask my MO about them, but I can't imagine her being opposed. You might want to try HUP.
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Jane, I had my surgery at HUP and the medical oncologist I met with last week had never heard of cold caps. Literally, didn't even know they existed and she's at a major research university. Frustrating. I didn't really like her for several reasons unrelated to cold caps so I'm looking for a new MO and possibly a closer hospital for the chemo (cold cap friendly would be a bonus). I'm in Chester County. I haven't yet decided if cold caps are worth the try, but I would like to explore all my options. I just feel such pressure to get started soon and I'm not ready. The chemo recommendation was unexpected and I'm overwhelmed.
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Jc254, I can't help you with finding a local hospital and MO, but I just wanted to reassure you about the time lag between surgery and chemo. Your invasive tumor was small, and it sounds like you had no node involvement. That was the case for me too. It was almost two months for me between surgery and chemo - August 1 to September 26 - and no one thought that was out of the ordinary. My tumor was grade 3 and HER2+, so aggressive, although small at 5mm. Most types of cancer just don't grow that fast, even when they're labeled aggressive.
I had great success with the cold caps and would recommend them to anyone. The other ladies on the September chemo board are just getting some hair - looking like a buzz cut. I'm so glad I don't have to go through that!0 -
The concern about the time lag probably stems for this- I was originally diagnosed in September with DCIS, ER positive and HER 2 positive. I enrolled in a clinical HER2 vaccine trial at HUP where I received a series of shots designed to wipe out the HER2 protein. Participation in the trial delayed my surgery until 2/14/13. The good news is that my post surgery pathology report showed no remaining traces of HER2 in the cancer cells. The bad news was that they also found a small invasive tumor along with the DCIS and my onco score was 29. Had they known about the invasion, I wouldn't have qualified for the trial and I would have had surgery much sooner. I only found out 4 days ago that chemo is necessary. I'm going to keep looking for a cold cap resource in the Philadelphia area. Hoping someone on these boards will pop up.
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Go to the Repunzel Project website. It appears there is a freezer at Chestnut Hill hospital in Philly. Contact them and ask for a resource for a former cap user. There has to have been at least one for them to have a freezer. Good luck!
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Very interesting about the vaccine trial, jc254! So does that mean no Herceptin for you?
TXSockmonkey - great idea - why didn't I think of that? I just looked at the Rapunzel Project website - it's too bad there aren't MORE freezer sites! Shirley, who started the Rapunzel Project, had her chemo at my facility and thanks to her I had the freezer available. She's my hero, along with everyone who came before me and posted about their experiences on this board.0 -
Hi Everyone,
I'm checking in to let you all know that I'm two weeks past tx #3 and my hair is doing fine. I shed, but just a little more than normal. My DH is doing an awesome job with the caps. We start at 8 am the day of treatment so he makes sure to put them on dry ice at 4 am. Because I'm the first one in my facility to use cold caps, everyone there thinks its great that I still have my hair. I hope I didn't jinx myself with the update. Hang in there cold cap users! We can do this and be pioneers for future users.0 -
jc254 READ YOUR PERSONAL MESSAGE.
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Hi Patin. Yes, that means no herceptin for me. It's an interesting clinical trial, currently in phase 2 at the Hospital of the University of Pennsylvania. The ultimate goal is to administer the vaccine as a preventative measure before cancer develops- similar to the chickenpox vaccine. They have a long way to go, current plans are to have a phase 3 nationwide trial - but it looks promising. Dr. Czerniecki was my surgeon and he's running the trial. There's a decent amount of information about it available on the internet. I plan on calling Chestnut Hill Hospital tomorrow about the cold caps- thanks for the suggestion.
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Ten weeks PFC....I had alot of thinning of my long thick hair but back to work with no wigs etc. I noticed my temple areas and nape of neck are covered with about an inch or so of hair which means I can pull my hair behind my ears now. I kept the hair on top and have trimmed 1 inch twice now along the bottom. Hoping for some thickness to come back in the back in a few months. I was going to color at 3 months but most of the new growth is dark and blends in with my lighter colored hair. Still using the color stick for spot graying. Plan to trim a little each month until it all evens out and get it shaped up in July or August. So greatful for finding cold caps and all of my friends here.....hang in there.....
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Looks great schoolmom!!!!
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Found some info on a mineral based root touch up product "Jonathan Awake Color Root touch Up'...got a great review in InStyle and can be ordered from beauty.com. Said it is oil absorbing and gives hair a thicker texture as well...seems to do great covering the grays. Just thought I'd share in case you are interested.
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Rhonda - Way To Go! Keep it up and all this will be a memory soon, and perhaps an inspiration to others at your center.
schoolmom - Sounds like you are doing spectacularly! Your hair should filling quickly. I have hair coming in all over too. It's such fun to see it, isn't it?
Best wishes for good health to both of you.
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I am happy to say that over the weekend we packed up and shipped back all of my cold caps!!! ...although they did their job well, I was SO glad to see them gone and my freezer once again open for business! I wanted to see if anyone in the IL area will be using the caps with dry ice you are more than welcome to borrow my coolers...just PM me for the details. I hope I can help someone else along the way.
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Hope,
Congratulations are being done with the wonderful cold caps! I'm right behind you with 3 tx to go.0 -
Hope, congrats! I remember how thrilled I was to pack up my cold caps and send them on their way!
Rhonda, I also had 6 treatments of TCH and remember being half way through. Just keep up the good work and you will finish before you know it, with your hair!!
jc254, No one at my chemo center had ever heard of cold caps, but my onc got on board. He was happy to see I still had hair each time I met with him. It really doesn't matter if you find anyone in your area who has used caps, if you want to use them, we are all here to help in any way we can.
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