Cold Caps Users Past and Present, to Save Hair
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Yeah PCCr's... Day 14 & I had my 3rd round of TH today! Still no side effects. Mild to no shedding; my MO & Onc. Nurses are amazed! We've become like Ringling Bro's 3ring Circus...it's great! Of course, I'm still holding my breath waiting for my hair to come out in the all to familiar clumps. As I keep reading all of your wonderful posts it gives my courage & strength! Today was hilarious, there were some new faces who hadn't seen my entourage...I told them we didn't get to celebrate the 4th, so we brought BBQ with us in the cooler and the grill was outside! LOL Hey...we are in TN, anything possible! Boy were they disappointed! As for all of the recent post; I second the comments on wiping down the caps and making sure they are totally dry before placing them on your head. This is SO important! It will keep the itch and scalp burn to a minimum. I did have a small chest rash (no itching thank goodness)as a SE, alittle hydrocortisone cream and it cleared up. Keep up the PCC talking and lets get these patented to everyone has the opportunity to use them if they so chose :0)
Happy Chillin'
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GolferGirl - nice to hear from you. Glad you had a good 4th. So excited that you're so close to being done and the hair is doing well.
GAgirl - sounds like you're doing great!! I'm not surprised at all. You are going to fly through this. I hope your helpers are holding up as well as you are. I know they say 21 days but if you've have little/no shedding it sounds very very promising.
My hair did well this cycle. I had less shedding than from the 1st cycle. I guess I'm soon going to embark on shedding from cycle #3 since I'm on day 15 of that. Really the craziest thing is the gray hair. There is so much that it truly looks scary. I use paint on stuff to cover it but still. The weird thing I've notice lately is that the strands themselves seem to be thinner that they were before. I'm wondering how much of this has to do with the fact that it hasn't been colored in so long and I'm used to it being colored. It doesn't seem thinner on my head but when the hair falls out I notice it.
Zachsmom - welcome to our group and see you next week!!
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Hi everybody,
I'm at Day 80 -- I don't know why I'm still counting, since my last treatment was 6/21 and last week was the second of my "detox" weeks...but yesterday was hair wash day and I was still collecting any stray strands in a bag. But today, when I rinsed my hair after my swim, there were some strands in the comb and I looked at them and...hooey! away they went down the drain. I can't believe it's been months since I haven't worried it was all gonna fall out! I think I finally feel like my hair is here to stay. And the funny thing is, I kind of need a hair trim. How many people emerge from chemo with that?? I started to notice a couple of 'little sprout' eyebrows coming back today. Of course, they're exactly the ones I'm going to pluck, but not just yet.
For those of you considering this, I am SOOOO glad I did PCCs with my treatment. It was work on infusion day (but honestly, made the time pass and gave me a very positive focus), and it has been one of the highlights of my recovery and treatment. I love being told I don't look like a cancer patient. And I love hearing how well everybody on the list is doing! The support here has meant everything. It is so fun to go back for repeated treatments, with your hair, and watch your care team become converts.
I started going to work today for a bit -- an emergency committee I'm on -- and it has been wonderful to see my friends and colleagues in person. They've been following my story, but to actually see me, looking like me (and more rested and refreshed than before), is great. I work at a children's hospital, and they are interested in getting a cooler and caps for our teen patients who go through chemo. We could be one of the first Peds hospitals to be able to offer this -- that would be a tremendous legacy!
Imo, PCCs are like the Holy Grail in terms of solving the worst of chemo side effects. Frank has really figured out what this narrow window is for success. What a difference it is making in our lives!
I'll stop babbling now. I wish I could meet more of y'all in person! We'll have to have a national reunion at some point -- maybe at one of the oncology conferences??
Susan
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Hi,
Here is my report from my first treatment.
As for the chemo (T/C 4 x @ 3), I am feeling ok. Got some skin tingles. I may be enjoying the steroid fix and the real effects will hit tomorrow.
As for the caps. Much of what has been writing in previous threads, I concur with. I'm commenting on things that I haven't seen discussed.
1: Because Frank wants the caps in the Keep Boxes when in dry ice you need to allow a lot more time for the caps to get cold. I used 2, 75 qt. Rubbermaids brand coolers with 50 pounds of dry ice in each cooler. Seven caps were in each cooler. (FYI-The rubbermaid coolers don't seem to be as well insulated as other brands). I had my caps in dry ice for almost 5 hours and the first ones were not cold enough and needed some more direct dry ice contact for 10 minutes to get to the proper temperature. The caps that were in dry ice for 7 hours were fine. For my next treatment, I'm going to put the caps on ice the night before and just deal with letting the cap "warm" up to the proper temperature. There was plenty of dry ice left over. My ice man had said he thought 40# would be the amount needed. I went with #50 for the first time. I had it delivered the night before and even with evaporation there was still plenty of ice for the entire day. Just need to get the caps on ice sooner.
2: PROBLEM-- I had a cap break on two seams. Luckily, after I was done with it. This really freaked us out. Today, we did an inspection of all the caps and discovered 1 other cap that was weakening in the same spots. What we then notice was these caps have a difference construction. They lack a circular reinforcement plastic piece between the side flaps and main cap. Two other caps were similarly constructed. My caps were packaged with 4 caps to a shipping box. I am guessing these 4 caps were from the same box. Don't know if these are an older design or a set of 4 that quality control missed. I must admit that I was happy to discover the construction differences. I hated thinking I had hurt a penguin! I'll be contacting Frank today about getting replacement caps before my next treatment on 7/27.
3: I took my mortin too early and 1/2 through the treatments I was getting pretty uncomfortable with the cold. Also, I used Mole Pad, not Mole Skin, on my forehard. The pad is much thicker and keep the cold off.
4: The "new" 3rd strap. This one was very uncomfortable and the velcro really cut into my chin. Differently need to work on that before 7/27.
5: I so glad to finish with cap #14. And thankful that I have only 4 treatments. I am amazed you woman you used more caps over more sessions!
Colleen
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Hi cmksocial, gmp300 told me that the third strap doesn't need to be on too tight. If you can nod your head forward without that strap and the cap stays on, then it is on tight enough. Once the cap is on tight enough, you can loosen that chin strap so it doesn't dig in.
Now that I am close to being done (yeah!) I am wondering when I can cut, color and wash and style regularly again? Has anyone gotten any advice on post chemo care? I'm guessing I have to wait at least 21 days post final-chemo for most of that, but what about cutting? I could really use a trim, believe it or not!
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Susan - how wonderful would that be to get PCC's for the teens! I really hope that works out. I would definitely love to meet you (and so many others) in person too!
Colleen - thanks so much for your post. Lots of interesting observations. I have a few caps that are weak at the seems. I don't think any of them have circular reinforcements but they aren't broken so that's good. I'm actually using a thicker moleskin too. The only reason is because that's all they had at the store the day I went and I thought maybe a little extra padding would be a good thing. I think the thicker one is working great. I have always used at least 15 caps. I think I'll be counting down this coming Tuesday to the last cap! Woo hoo! The end is near! Congrats on making it through #1. Hopefully your side effects will be minimal!!
GolferGirl - I've been thinking the same thing. Mainly, when can I dye my hair. I think that's the only restriction I really care about. In this crazy heat we're having a cool shower is really nice. Not having gel in my hair is probably a really great idea, and in the summer I'm fine without the blowdrying. Even the washing twice a week is not bad. I sure hope I can find a gentle color that will actually work. I'm sure you can trim your hair after the 21 days but I'd probably still be scared to let someone else wash and comb it. Hopefully some experienced people will chime in!
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This Sunday will be my final Day 21, so I'd love some advice on when I can wash with slightly warmer water? Even tepid would be a relief. I'm not real clear on the post-chemo care. I don't color or blow-dry or use any styling products, but just warmer water would be a huge relief.
I'm going to a very important (to me) party on July 17 back east, and I am so excited that I'm going with a full head of hair, rather than looking like a cancer patient. The party is for a friend who has a foundation at a major cancer center in honor of his late daughter, so it would be totally in keeping to be one of many cancer patients there (I've been involved in cancer care in this manner for a long time, and now am the patient myself!), but that's not how I wanted to go. I'm so glad to have achieved this!
Drim, I will be thinking of you on Tuesday big-time! Btw, I am still fighting with insurance over my radiation treatments. I'm extremely frustrated even though I have a big team of people fighting/inquiring for me. I'm starting to lose sleep and won't be happy until I've made the CEO of my insurance company cry! Can you tell I have a fighting spirit?!?
GolferGirl, when is your last TX?
cmksocal: I had lots of fatigue/stress issues with caps. My caps were handed to me from Joansf, then handed to ordinarymammal, and ordinarymammal and I did a careful check when handing them off only to find that lots of them looked ready to split. She got her replacements in time (!) but I think the dry ice really does fatigue the plastic seams even though we used them properly, kept them in keep boxes in dry ice, and always kept them frozen in fridge freezer when not in use. We found very consistent fatigue at the rear of the cap, where the flaps meet the main part of the cap. Just an observation, but good to check the caps each time.
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Day 19 and a lot of shedding!!! a lot, looks even though, im worried, no clumps i dont think, what are clumps? how big?? Dam AC!!!! im staying positive though. day 21 is is Friday... scarrrrrrrrrrrrrrrry,
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Day 20, but its early in the am... im pulling on it and no clumps, except the big one in my tummy
tomorroww is my bday and i really dont wanna lose it then... so ill wash today and make it look pretty
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cheyenna - you're going to be okay. Remember that you're not washing your hair as often, and yes AC is a tough chemo, so you will have shedding throughout the day (instead of a bunch of hair in the drain every day when you wash it). If you're this far out and you don't have clumps it's working!
Tomorrow is a special day - Happy Birthday Chey and Happy last chemo GolferGirl. I'll be thinking of both of you!!!
Susan - still having insurance issues myself. Aetna has definitely pulled out of negotiations with my HC provider. My HC provider is working on getting some sort of transitional care exemption. Worst case scenario is that I have to go somewhere else and drag my butt across town every day for 7 weeks. I'm still thankful that I live in a city and don't have to travel 2 hours like some others do so I can't complain too much. Are you having hair collection withdrawal - hee hee?
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GG...yea!!!tomorrow is my B-day and your last chemo day!!! whew hoo!! Oh and i have hair still!!! no i think ill keep collecting for her, i have 14 more to go!!!! lol0
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Hi Cold Cap ladies~
We are back from Disney and those kids kept us going from 10 in the morning till midnight each night.
I kept my spanx on my hernia site and took lots of breaks. We had the best time!
I wanted to mention that I had my last chemo in March and I decided to have my hair colored before we went to Disney. I went to my regular hairdresser (who is a BC Survivor) and she used a vegetable dye so that it would not harm my hair. She tried to use the same sort of color that we have used in the past and wow did it turn dark. My hair looked black when she was done and I have light brown hair. She said that my hair was fragile and soaked up the color much more than it normally did. It will wash out over the summer but I thought I should let you all know.
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ok day 21 and i still have a head full of hair!!!! did i make it??????0
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Cheyenna - congratulations. I can hear Barry Manilow singing "Looks like we made it" in honor of your hair on day 21.
And happy birthday!
Colleen
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Happy Birthday cheyenna! You've got LOTS to celebrate this year!
Susan
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Happy Birthday Cheyenna!! Try not to be too worried about your hair (I know it is hard) but everything will turn out fine. Take it from someone who used the caps while on AC. I got a little scared around my 3rd or 4th treatment that all my hair was going to come out but it didn't. I now look back and tell myself "all that worrying was for nothing".
Enjoy your Birthday!!
Kelli
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kelli, day 22....0
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Yay Cheyenna - Day 22 with hair! Congratulations and happy belated birthday! Like Susan said, lots to celebrate this year!
I am done, done, done with chemo and I have my hair! My birthday is July 20th and I feel like I have already gotten my gifts this year - no more chemo and all my hair! Yay!
Ang7 - so glad you enjoyed Disney and thanks for the coloring tip. I was going to ask my hair dresser about kinder and gentler color, too, so i'll keep in mind that the hair really soaks it up and ask her to take it realy easy when I get to that point. My gray is not too bad, so i think i will wait on that for bit, but the trim I definitely need soon! I think I will take my own shampoo when I go...
Drim- Just a few more days til your done with TC! Great news1 You don't have to use the caps with the herceptin, too, do you? I hope not! Hope your final TC goes well!
Hope everyone is enjoying a good hair day! GG
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For anyone in NYC going to NYC/Cornell - I just got a call from Frank last night. The Rapunzel Project has raised enough $$ to bring a freezer to the hospital! I am tickled!!!
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wonderful news!!!! we need them in all hospitals...0
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How much is needed for a freezer?
Colleen
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I know, wouldn't a freezer be heavenly? After this last dry ice multi-cooler cap-athon, I wanted to see if I could find one. Rapunzelproject.org lists specs, but not a price, for the Norlake Scientific NSFX221, which freezes to -40 degrees Celsius. I found it several places online for the lowest of about $6200. Was so depressed about that, didn't bother checking what shipping (for a 500 lb item) would be.
There are a jillion different types of lab/scientific/medical freezers. It looks like they fall roughly into three categories--low temperature (down to -25 or -30 degrees celsius), very low temperature (down to -40 degrees) and ultra low temperature (down to -85 degrees). I worry that the low temperature ones wouldn't quite get cold enough. I think the rapunzelproject did their research very well and came up with a good option. I'd be interested to see if that is the freezer they're getting for NY. (Oh, Zachsmom, you lucky dog!)
Checked around at used lab equipment sites for the freezer. Haven't yet found one on craigslist. Hey, I can dream, can't I?
Oh, there is also a cryogenic freezer that goes down to, um, I think -150 degree. I'm very tempted to buy one, toss myself in, and hopefully wake up in a thousand years with the cast of Futurama--by which time breast cancer should be cured...
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Gee only $6200.00 for a freezer -- isn't that cost of 1 chemo treatment????
You know, in just the short time that this thread has been active the number of people who have "used" the caps has grown. The number of people who "know" about the caps has grown. And the number of hospitals that are investigating/providing the freezers has grown.
I'm going to be on campus (U of So. Cal) tomorrow and will visit some colleagues in the School of Journalism (I'm in the School of Communication). I'm going to volunteer to be a newsstory for their journalism classes.
Colleen
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Hello Everyone!
Just wanted to say hi to everyone..and yes Colleen the number of us that used the caps has grown so much in the past year! That's how were going to get these caps and freezers in every hospital across the USA-one by one and us telling two friends and they tell two friends.... Doctors are so skeptical to want to try and get involoved with the caps at first..but if we let others know that they can save their hair more and more will be asking to use them and eventually every doctor will have to take notice!
Cheyenne-Happy Belated Birthday! Hope it was a great one!!! And I see you have your beautiful hair!!! Wonderful!!!!!
Golfergirl--Congratulations on being done--of course with your hair!!! See..it wasn't that bad!!
Kelli-Howdy girlfriend!!!!
ordinarymomma--Wouldn't it be nice to just freeze and zap all this darn cancer away from everyone forever!!!!
Drim-Good Luck with your insurance..I had Aetna too so I know what your going thru!
cmksocal-Yes - the newer caps have no number on the straps and they seem to be alot weaker in that area of the seam. I told Frank about that and they are working on correcting that. Try to pick the cap up gently from the center. thanks for your report!
Zachsmom-Congratulations on getting a freezer! Woop woop!! Be careful when swimming-the chlorine could have a reaction with the chemo. Frank recommends keeping your hair out of a pool but the way sebm9 did it sounds interesting!!!
sebm9- that's wonderful that you are a swimmer-great excercise!! Rinsing your hair and putting a cap on it sounds like great advise for pool goers. Plus your pool is lightly chlorinated helps! Did you wear a regular swim cap-was it really tight?
Ang7-So glad you had such a great time at Disney! I love it there!!
GAgirl01- Hang in there -your almost done-I agree-keep talking Penguin Cold Caps!!!
Well sounds like everyones doing fine-I hope you's are enjoying your summer the best you can!!
Everyone Take Care! Geralyn
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I start July 16 and am considering cold caps. I have short, thin hair. Does anyone worry about scalp mets? Also, I'm so new to this and am wondering why so many people at Stage 1 or 2a or doing chemo? Is it age related? No one mentions KI67 or Oncotype DX. I thought I would just be doing radiation with Stage 2a, node negative. But my KI67 was 35 and my Oncotype DX was 48. I nearly went through the roof. I don't even understand how this can be. If nodes were not involved, how can there be distant mets? Are the cells just there waiting to do their bad stuff? Thank you so much for any and all replies. Safe journies for everyone. Stent Double
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welcome stentdouble - I'll try to answer your questions as best I can. As far as the scalp mets, I do not worry about that. I think for me the risk is so very minimal. There is a discussion about this a few pages up and basically the risk for early stagers is so small that even the doctors acknowledge this.
I think there are a variety of reasons for doing chemo and you have mentioned some of them. Age is a big factor. I'm not sure enough is known about recurrence in younger people so for many people it's worth taking the extra precaution. I myself was 43 at diagnosis which is considered young so the doctors felt like I could handle the chemo well so it was worth doing. Hight Oncotype is another one for those who are ER+. Those who are ER- don't have any other options so some choose to get chemo. People who are HER2+ like me also really have no choice but to get chemo with herceptin.
As far as distant mets for node negative - unfortunately just because nothing was found in the nodes, especially for those who had a SNB (a) does not mean there for sure isn't anything in any of the other nodes (b) doesn't mean that the cancer didn't get through the blood stream or bypass the nodes. The chances of this happening are probably low for node negative people with no vascular invasion but not impossible. Nobody wants to be that one person.
Hope this helps and I highly recommend the caps. I'm going in for my 4th and final treatment of TC tomorrow with a full head of hair (and eyebrows that are just about holding out for now).
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Today is my first day of not having to count what day it is post-chemo! I can declare myself done with the chemo process! Still wrestling with insurance like crazy (Anthem Blue Cross). We've requested a 72-hour turnaround on the appeal (they finally acknowledged receiving our third send!) so I hope to know this week. If denied again, I may have to sue through the state department of health to get my standard treatment. No wonder insurance is so expensive!
gmp3000: the swim cap I used is the same I regularly use, a thick lycra cap. I was very careful about putting it on and taking it off, but somehow managed to never pull any hairs in the process. I'm convinced the hour immersed in cold water each day helped contribute to the hair-saving process.
Drim: Yahoo! You are going to be done tomorrow! I couldn't wait for my fourth and final treatment. It was very emotional for me. Seems like we just got started, and here I am going back to work part time today. My eyebrows are minimal, but there. I've been using a little eyebrow pencil and it's helped (nothing cartoonish, just enough to darken some of the hairs a bit). I saw the first itty bitty brow hairs sprouting last night so I think they're coming back. Chin hair has come back like it's a big party...oy.
stentdouble: Node negative is one very good piece of news in a complicated puzzle. The Ki-67 number and Oncotype are also very important indicators; I had a high Ki-67 (35 also), lowish Oncotype (20), clear margins, good surgery, etc., but my Ki-67 and my very low Vitamin D count (7), and my age and ability to tolerate chemo, were the combined slam-dunk in moving forward with chemo. Your Ki-67 number is telling you that your cancer cells are very aggressive, and your Oncotype is telling you that you have a higher rate of recurrence in future. Chemo will be an important step. The node negative means that cancer has not spread through your lymph system; however, it could still spread through blood or bones and systemic treatment will be important. If you have a single little cancer cell in your body, your Ki-67 indicates it would aggressively go forward. Knock it out now! A few years ago, before the Oncotype test and before the Ki-67 was understood, this information wouldn't have been available and you might possibly have undertreated your cancer. Luckily, you've discovered PCC and you will not lose your head hair while going through chemo. Good luck!
Susan
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Drim - Good luck tomorrow! Last TC, yay!
Susan - so glad you are done counting. I am on my final countdowm, too, but have a few weeks yet to go. I hope it all works out with your insurance. That's so frustrating, you'd think standard procedures would go through without much trouble. Ugh!
I am off to get my final Nuelasta shot
Happy hair to all! GG0 -
Hi everybody, Got a call at home this evening from Anthem Blue Cross, and my expedited (72-hour) appeal of denial has been heard, and they've now approved my radiation treatment. I begin my first treatment on Monday at 7:30; last treatment will be Sept. 1. I think I'll sleep well tonight for the first time in a month! It's unthinkable to me that some bean-counter who has no knowledge of me or my medical history, and probably isn't qualified on the topic, can make a decision about my medical care and overrule my own physicians! No wonder health care is so expensive. Thanks for cheering me on!
Golfgergirl: CONGRATULATIONS!!! Woo hoo!
Susan
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Susan!!! Congratulations. That's such great news. That was so ridiculous. I can't believe they caused you all that aggravation. Of course you need rads - who the heck would want that. Can you see the light at the end of the tunnel.
I don't think my insurance issue is going to be easily solved or solved at all. My problem isn't that they are denying coverage. My HC provider dropped Aetna due to contract negotiations that fell through so I don't think Aetna is going to allow me to consider them as an in-network provider. They happily approved me (I don't think I needed approval) for out-of-network coverage at the low low price of $2,000. Thanks - it was supposed to cost me $0. If there is nothing I can do I'll just spend $600 on cabs to travel across town to an in-network place. This HC provider has 3 centers - all convenient to where I live, however they also seem to have a monopoly on conveniently located centers. Unbelievable. I can't even get through to any billing people - ridiculous.
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