Cold Caps Users Past and Present, to Save Hair
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Hi all,
Wish I could go to the "Gathering" in California but I will be trying to recover from hernia surgery which is tomorrow. Shake your hair for me, ladies!
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I've just recommended them to a friend who will be starting chemo for lymphoma early next week. I hope she can get them in time (and that it works)! I was lucky enough to escape chemo, so didn't have to deal with this personally.
Thanks to the women of this thread, and of this board in general, so that I could know about it and recommend it.
I'll let you know what happens. She's also a NYC girl (as am I).
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Thanks Kelly! So glad you had success and even more glad that you are done!!!!
Best,
cmz
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hey ladies,tomorrow (Friday) is the day.. gonna pick up dry ice late tonite and get up early to get it going.. im on ACx4 then Tx12 so its gonna be a long haul!!! my sister is more determined then i..lol so i have good support!!! im so nervous.. i have decided to go to hospital and have chemo rather then my ONC office.. too much trouble with them!!! im not happy with them at all, but when i went to ck out the hospital today the nurses were so good to me and have even giving me a special place in the corner with more room for my ice chests.. they said they would help any way they could, and kept reassuring me that if it does not work, its ok...
Chemo Cocktails and Penguin party hats anyone??? lol im so scared lol 0 -
Cheyenna: Good Luck today!! Let us know how it goes...Just know that the first one is usually the worst with all the anticipation and unknown but you will do fine. I am glad you have some good nurses, it makes a world of difference!!
Take Care.
Kelli
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Hi Cheyenna, Hope the chemo went well today. I treatment #3 today ... with a full head of hair! I get nervous before every treatement but really they have been uneventful. I joined the May Chemo thread on here, you shold join the June Chemo thread if there is one. So great toshare stories and support with people who are at the same place you are...and lots of good tips on Se's. Let us know how it goes!
MomduMatt -welcome and feel free to vent on here anytime! Cancer sucks but the women on here are great. You will find lots of support and help and we all understand (unfortunately) what a tough journey this can be. Hope you are able to work things out on the caps! Kee us posted. GG
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HI all, Thank you, yes i got through it just fine as all has be said.lol, 7 hours in a half hours in those caps...cold!!!.hahah ACT is gonna be tough but we did really great with no problems at all.. i kept my mouth shut and let sis take over...
boy was that hard...lol i only have 15 minutes of predrugs, so it was an hour and a half total in the chair. was glad to get home for the rest of the caps. i felt like i was cold all over my head but its so hard to tell, I told sis all we can do is all all we can do! she is such a perfectionist it drives me nuts..hahaha. So i know if it does not work it was not ment to be.. BUT IT WILL WORK!!!... im really gonna be counting the days down, is it day 14 or 23, im not sure time will tell.. I do feel so much better the first AC is outa the way, thank you!!!
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cheyenna, congratulations on getting through round 1! And golfgergirl, congratulations on getting through round #3 with a full head of hair. Isn't that fun? That was the trip where my nurses and doctors were finally, officially, astounded at the results. I can't wait to go in on Monday -- my final treatment yeehawww! -- with a full head of hair. Eyebrows are hanging in there, I think I'm going to ice them to stimulate hair growth. Then again, I haven't had to tweeze in 2 months so maybe not...
I will be at the Hayward PCC event on Sunday and would love to meet anybody else from the list.
I'm having lots of leg fatigue right now, but the more I walk (and swim and work out) the more it goes away. Hills and stairs are more challenging, but flat areas I am fine.
I have to think of something nice to take to my nurses and care team on Monday, as a thank you. I saw some beautiful chocolates with a gold decoration of a woman with long hair and a butterfly on her shoulder, and thought that was symbolic (and you can't go wrong with chocolate!).
Susan
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Hi Cheyenne!!
So glad to hear you SURVIVED your first treatment!! Sounds like your helper (sis) is doing a great job! Your really lucky to have such a great helper and all you need to do is sit there and stay warm...and of course drink your water and pee!! LOL!! Hope your feeling ok-give me a call-I would love to talk! Take Care, Geralyn
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Hi Everyone! I've been MIA for a while there. A few projects at work have kicked so I haven't had any time to write.
MomduMatt - welcome! I'm glad Shadow was able to answer your question quickly. There are no real resources in NYC. At this point its just us doing all the work and research on our own. When I went in last week for my herceptin an older woman said - "you've already had 2 TC treatments - how come you still have your hair?" So I explained it to her. The chemo nurse happened to be standing near by and the woman said - nobody told me about this. I kinda felt bad for her and the chemo nurse because she kinda put her on the spot. But I explained that nobody told me either. You had to do all the research yourself. The woman didn't seem too upset thankfully and she did have on a fabulous wig so I felt a little better. Anyway, I'm doing my treatments at Weill Cornell and now there is someone else there who is using the caps. They are very supportive there which is one of the reasons I chose to do my treatment there. Hope you were able to get in touch with Frank and get the process started. Please keep us posted!
SweatySpice - Good luck to your friend! I'm glad this is starting to catch on in NYC!!
Cheyenna - YAY!! Your sister sounds amazing. Sounds like she has just the right personality for the job. My helpers (my mom and BIL) are great too!
GolferGirl - Congrats on getting through #3. I have my #3 on Tuesday. I am feeling a lot less stressed about my hair these days. My left sideburn is a little thin but other than that things are going really well with the hair. Yesterday someone said to me - you have such thick hair. I cracked up because I really don't have thick hair but it looks that way when you can't put stuff in it and it just gets big!
sebm9 - how exciting that you're approaching the finish line. You've been a real inspiration to me. I love your attitude. Sounds like you're on a mission to not let any of the possible side effects effect you. I loved ordinarymammal's story about you! I wish I could go to the conference and meet you in person but I live way too far. I'm trying to do the same - going through the day as if this isn't really happening. I can't say enough about how much having a full head of hair aids in that process. Hopefully I continue to do as well as you have done!
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I am glad to see the caps are working for everyone undergoing chemo right now. Its a long road but when you look at it from the other side you will be amazed that you got through it all. It goes faster than you think.
Good luck to everyone!!!!
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ok, im so tired and feel like i have the flu, but i forget, when and how often am i allowed to wash my hair. can i get it wet when i shower? i think i got freezer burn on parts of my head as well.lol
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Hi all,
I messed up an edit to an earlier post, so I'm repeating myself here. My lymph node biopsy came back negative! I will be starting chemo in early July. (4 TC every 3 weeks).
Where can I get the infrared thermometer? I live in Los Angeles.
Colleen
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cheyenna - sorry to hear that you're not feeling great. Hang in there. It gets better. You should not wash your hair more that twice a week. You should not wash it 2-3 days before and after chemo. You can get it wet in the shower but just make sure it's cool water.
cmksocal - Congratulations about the lymph node negative. That's great news! TCx4 is what I'm on too and the caps are working great. I got my thermometer on line at amazon.com. Make sure it goes down to at least -40C.
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I started checking infrared thermometers on Amazon and was reading reviews. People were commenting on the "variable readings of the devices." One model had a range of +/- 10 degrees per the manufactuer. That is a big difference when we are using a device for PCC. I don't know if mentioning specific brands would violate forum rules, if so please send me a private message with what you used.
Thanks,
Colleen
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Just popping by to say that my friend decided against the cold caps. If I'm understanding her correctly, and she starts chemo in 2 days so her conversation was all over the place and a bit unfocused, she looked at the website and thought it was quackery.
I tried.
It's her cancer, and she can treat it as she chooses. If, a few years from now, it becomes more widely accepted - I'll just say 'I told you so.' She's doing chemo at Sloan.
Wishing her the best of luck, and fashionista worthy scarves.
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Hi everyone,
Just wanted to report how nice The Gathering was today in the Bay Area; I met other PCC users -- all looking ravishing with their hair! Lots of hugs, swapping stories, and of course we were all thrilled to meet Frank in person. He is absolutely the kind, big-hearted brilliant man he seems on the phone and in the videos. (He was a little mortified when he realized how many times we'd all watched and studied the video and could repeat it in our sleep...) He shared his background (always wanted to be a physician but became a structural engineer, even played a key role in the Sydney Opera House design!), how he came to invent the caps (an AMAZING story), and talked about the years and years of work he personally did to perfect this, studying everything from hair to chemo to plastics...unbelievable dedication. His wonderful wife was also there and we got to thank her for letting Frank be up til 3 in the morning helping us users in the states.
The story of how the company became Medical Specialties of California is really funny: it was Medical Specialties of the United Kingdom, but as he called oncologists and hospitals in the UK to tell him about his invention, the doors wouldn't open. One day, exasperated, he said he was calling from Med. Spec. California -- and sure enough everybody wanted to meet with him that very day! Hilarious!
I extended a "hello" and "thank you!" from everyone on the list; he really does know everybody by name. It was also kind of funny that after he gave everyone a big hug and asked how we were doing, began examining our hair: looking at scalp for bald spots, checking texture.
I also learned more from him on why he doesn't give out more specific instructions re: dry ice (can't due to liability, so we'll have to be in charge of preparing an FAQ or something). He also clarified why one of the most important things we can do (besides be kind to our hair as soon as we know we're going to do chemo) is to stop using deodorants with aluminum. As aluminum is absorbed in the bloodstream, when it reaches the hair follicle it creates a kind of bonding agent and can cause the chemo to bond to the follicle. It takes aluminum 5 days to be cleansed from the body. I thought it was just anti-cancer advice, but didn't realize how important it is to stop using a deodorant with aluminum in order to prevent hair loss, so wanted to pass it along.
He also had some exciting new developments in caps and coolers. I had to swap two caps for my treatment tomorrow, and he explained that there is now more coolant in the temple area and at the back of the head, where many women have heavier shedding.
He confirmed the story of the woman who began using caps after she'd begun her first chemo and lost her hair. He confirmed that she has about 2 inches on her head and that it's been growing throughout her subsequent treatments. So sweatyspice, if your friend proceeds, it's not too late! She could still begin the caps after she's lost her hair. 200 of us in the US and hundreds of thousands around the world are proof!
I took my ziploc with my accumulated lost hair so far, he was surprised there was so little. He said that usually those of us with thicker, coarser hair have heavier loss and women with thinner, finer hair save more, but so far (albeit one more treatment to survive) I've done well.
After he spoke, we shared some of our stories, and when I began speaking I became so emotional! But it was an honor to tell him in person how he's changed my life, helping turn one of the absolute worst experiences of my life into one of the most positive and uplifting. Men and women with all kinds of cancers, going through all kinds of chemos, have a right to know about this. They have a right to their spirit and dignity and their hair. Frank has identified the narrow window in which this works, and has fine-tuned not just the mechanics of the caps but the protocol according to hair type, chemo, temperature, etc.
Enough, I gotta push some more water and get ready for tomorrow. First day of summer, last day of chemo!
Susan
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Susan!! Thanks so much for your thorough description of the events yesterday. How I wish I could have been there. Thanks also for the clarification on the aluminum-based deoderants. Boy am I glad I took that advice and switched right there and then to non-aluminum.
I was thinking about you last night and will be thinking about you today as you go through your last treatment. That must be so exciting!!! I go for #3 tomorrow. This is definitely going more quickly than I thought it would. I'm doing the happy dance for you!!!
sweatyspice - that's funny - quackery. I guess it is hard to believe how amazing the caps are when you are being told by the entire US cancer establishment that there is no way to prevent hair loss. When someone first told me about them I didn't believe it either and dismissed the whole thing. Just didn't think it would work for me and thought it was too much work to impose on others. I also didn't want to be an outcast at the chemo center. If it wasn't for this discussion thread I would have never gone through with it but after reading peoples' experience I cried and knew this was for me. I don't know what regimen your friend will be on plus I don't know if the caps are advisable for lymphoma so don't be too hard on your friend.
Colleen - I will send you a PM but who knows how accurate mine is. My helper tells me he already has a feel for when the caps are right even without the thermometer.
Hair update: So far Tx #2 is going better than #1. By this time 3 weeks ago I was shedding more strands than usual and it lasted about a week. This time I'm not. I think my helpers got better the 2nd time around.
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Drim - according to the PCC website, the caps are good to go with the chemo she's having (CHOP, which is standard first line treatment for many lymphomas - and that's some SERIOUS chemo!). I thought about sending her a link to this thread, but she'd probably ignore it. And she'd probably be pissed at me for mentioning her, even in an anonymous way.
Thing is, at first she was talking about refusing chemo and just letting the disease take its course precisely BECAUSE she didn't want to lose her hair. If it were me, and I could afford it (she can), I'd almost certainly give it a shot and if it didn't work, well, it didn't work. I've always had a fondness for dry ice, I'd think it was a fun adventure.
Now she's all about being a scarf fashionista. If it were me, I think I'd just go around bald.
Different people, different reactions. I think it's sad that she'll definitely lose her hair, but it's her decision. All I can do is try to support her the way she wants to be supported...
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Hi Susan,
Thanks for letting us know how The Gathering went! I so wanted to go too! Your description was the next best thing to being there. I hope that one day we can plan another one soon-Great idea!!
Geralyn
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Hi Susan, Thanks for filling us in on the Gathering! Sounds like a great time. Good luck today on your last infusion! I had TC#3 on Friday and while it went well enough the day of, I felt kind of flu-ish on Saturday and Sunday. Not horrible, just not as easy as the first 2 treatments. Feeling better today, I'm happy to say. And ready to wash my hair today, yeah! So far, eyebrows and eyelashes are hanging in there, too.
Drim- Good luck tomorrow! Hope it goes as well as the first 2 for you. I had someone tell me my hair loks thicker, too, which is very funny since I have thin hair. I think its a combo of little product (I've been using the Ojon leave in conditioner) and not washing it everyday. I rinse everyday, but not wash, and I think maybe it does look thicker....funny, huh?
sweatyspice- sorry your friend decided against the caps. They do work! It's good of you to support her decision. I cried for 2 days when Ithought I was going to lose my ahir, so for me doing the caps was a no brainer. I figured if they don't work, at least I tried. But they are working! I'm so relieved. It has made this whole process so much easier for me to deal with. In any case, you are good friend to try to help her out and to support her decision. So glad she decided to do the chemo afterall! A friend of mine also has lymphoma and she belongs to a lymphoma chat group kind of like this one. You should see if your friend has found that group. I'll ask my friend for the link; she seems to like it as much as we like this site! It's so nice to have people to chat with who are going through the same thing at the same time.
Cheyenna - so glad you made it through treatment 1! You'll have to keep us posted on how your hair does. I had my most shedding after treatment 1. Did not have nearly as much after treatment 2, I think we got better with the caps after that and I got better wih the no products, use a comb, don't pull on it stuff.
Hope you all have a happy, SE-free week! GG
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Sebm9 Im sorry i had to miss the gathering, was so tired Saturday and didnt think it would be good to make the trip, though Sunday and today i feel really good. I think it was all caught to me and reality really hit after first treatment. Im glad you had a great time and I expected nothing less outa Frank Fronda as im sure we all did
push that water!!!Drim your almost there, im still sweating the next 15 days, lol my sister has it down though! she is so funny!! i love her to death. she gets on here and reads all the tips and stories. i could not ask for a better helper,
GG i picked ot out today and have that pure shampoo by Regis for when i do get to wash it. ill keed ya updated thank you
GMP300 i love ya!!!
i washed my hair for the first time in like 5 days it felt good, i picked it out and was scared to do so.lol i took a 30 minute walk with a friend and it was windy so all i could think about was my hair blowing away haha. i have an appt tomorrow at 100 to find out if i have that Brac gene. im a wreck! i have a sister and a little girl. if i remember the DR said it was low risk for me but still i cant help but worry, i asked for the test.. Im glad you are all doing well and will keep you informed on my progress. Im very positive but that AC is strong shit!!! lol thanks for being there,
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Hey all,
What an interesting thread! I started reading it a couple of days ago but havent had time to really read much of it, which I want to do SOMETIME. Not that it would do me any good now as my chemo was late last year. I had long straight thick hair that was about 2 feet at the longest part from the top of my head, and I WASNT IMPRESSED ( UUUUGH) to have it just unceremoniously mowed off. Now I have a mass of unruly curls that is slow growing in. Most assuredly, had I known about cool-caps I would have enquired about it. Is it only available in the US???
Musical
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Woo hoo! I am done! Three more hours in caps and then no more! I have spent the first day of summer as a Penguin
The best, absolute best part of the day was when my oncologist came to my room with a big grin on her face. She didn't even say anything, she just smiled and hugged me.More later, I'm tired! and cold and have a few more hours to go.
I just wanted to share with y'all!
Susan
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yea!!! You did it!!! im so happy for you 0
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Congratulations on having graduated penguin school! This will be a graduation ceremony where caps are NOT allowed
.Colleen
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cmksocal: What a great line! Hilarious! Thank you for that final wonderful thought of the day! i might
have to borrow that!
Susan
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Haha, too funny, but will be fun to toss them up in the air, forever!!!!!!! 0
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Way to go, Susan!
That last day of caps is such a good feeling - your oncologist sounds so nice!
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Ang7: My oncologist was awesome throughout, but she was definitely impressed during my final chemo. Speechless, then gave me big hugs. And today, when I went to get my neulasta shot, the whole team presented me with a gorgeous bouquet of flowers! It was all I could do to keep from crying.
My roommate on my last day was a woman who had not only heard of PCC, but had asked her oncologist if she could use them, and he told her they don't work (!). Must have been someone who'd seen the old gel-caps from years ago. Unfortunately, I think that's the reputation that PCC has to fight against.
Since my final day was the first day of summer, I got up super-early to watch the sun rise at the top of the Berkeley hills. My last cap came off about 15 minutes before sunset, so I drove to the Berkeley Marina, tossed my cap in the car and skadoodled to a bench to watch the sun go down.
It's all gone faster than I thought it would!
Susan
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