Cold Caps Users Past and Present, to Save Hair
Comments
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Susan...you did just make me cry...out of joy and happiness for you. I can't believe they gave YOU flowers. You must have been their favorite patient ever. But also crying for the others who didn't get the opportunity they may have wanted to save their hair.
Again, a BIG CONGRATULATIONS to you for being done. In just 3 short weeks I will be where you are today! Going for my neulasta shot in a bit. I know the onc nurses there are impressed with my hair as well.
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Drim, I am so thinking of you today and for the next three weeks! I have to keep reminding myself that I'm done with chemo, but I still have to detox for the next coupla weeks (and beyond...). Would you believe I'm still nervous that this last chemo will knock out my hair? When I saw Frank, he examined my head and hair and said "Oh, you're fine, you're keeping it." It felt like I was being, I don't know, blessed or something.
I'm having my little neulasta aches -- starts at my neck (unless that's from the caps!) and works its way down my spine to my hips. Funny thing is, I don't care! :-)
Cheers,
Susan
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Susan - Congrats on being done and on proving to your docs that the caps do work! No doubt your nurses and team will be talking about how the caps worked for you! Yeah! I'm sure you've made it a lot easier for other women who want to use the caps at your center.
Drim- Hope your treatment yesterday went well. For some reason, T#3 was my worst yet. Not horrible, just a bit queasier and more flu-ish than the prior ones. But I'm thinking part of it may have been the heat this weekend; it was sooo hot here! So far, no sign of my period after this treatment, which is ok by me. And the hair is hanging tough
Cheyenna - Hope you are doing well after T#1! It's scary waiting for that first "danger zone" to pass, but it will and you will still have hair! Hang in there!
Musical- I hear the caps are available in the UK and Australia, too, though I don't know for sure. If you are not in the US, you should still contact Frank Fronda at Penguin Cold Caps. I'm guessing if he can, he'll help you out.
A good hair day to you all! GG
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Thanks Susan and GG! Treatment went well yesterday. I think as far as the caps, they went better than Tx #1 but maybe not quite as good as Tx #2. I had a bit of extra hair loss after Tx #1 but I don't think I've had any after Tx #2. By this time 3 weeks ago extra hairs seemed to be falling out. It'll be intersting to see how #3 compares to #2.
GG- Thank goodness the period thing is over for both of us. That was a rough couple of days but hopefully it will stay away for good now. They told me I was a little enemic which did not surprise me. A little is good considering what I experienced. Hope you're all recovered now from #3. Yes, it seems to be hot all over the country. It's in the 90's here.
Susan, I get a little bit of hip pain from neulasta but it usually starts a few days after the shot. I never care either. YOU'RE DONE YOU'RE DONE YOU'RE DONE!!!!
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Hi Everyone,
Drim, you were talking about the hot weather. GG, Susan, Cheyenna, is it important to avoid situations where you'll get hot? Getting into hot cars? Taking the kids to the pool? Going to the beach? Working out? Just wondering.
Thanks!
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cmz, good question but im not sure, i think you should stay out of the heat, when my kids swam today i put a pcc on just to sit out there with them just in case, but last week i didnt think about it and did not do it, im a bit worried about the heat as well, We get 110 degrees here easy in july and August,of coarse im doing treatment thru it.lol I was told by the girls to rinse and wash your hair with cool water.. i think we wanna keep those hair follicles closed.
Help, ok my scalp is really itchy, its day six. is that normal,? im used to washing it everyday so im hoping its just cause its dirty? also, its flakey more so in some areas then others, i wonder if this is part due to freezer burn? around my temples and forehead,
ISusan, congratulations again, those flowers are well deserved!!!! i go till November, 14 more treatments...whew hoo, lol
GG, so far so good, no sick,pain, or anything else yet,
well its only been 6 days, but i do feel i can smell the AC in my body, it probably sounds crazy but i swear i can smell it on me.. 0 -
Cheyenna, My scalp was itchy and flaky at first, and I came to realize it was (a) because of the drying effects of chemo including on skin and scalp (push that water!!) and (b) because I wasn't washing my hair every day. At first my hair was pretty icky, but it's normalized throughout treatment. I go about every 5 days before washing. I did rinse every day in cold water, sometimes a couple of times because I swam daily throughout treatment. Cold water encourages your follicles to grow; the deep cold of the caps puts them to sleep so they don't absorb chemo.
Cmz: We don't get hot temps here in Berkeley, and I've never used hair dryers/curling irons etc., so I've only had to contend with remembering to keep cold showers (at least on my head). I would imagine anything that would dry your hair -- high heat, sun, etc. -- would be beneficial. Working out and exercising, even walking, is extremely important in detoxing and keeping your system and your liver healthy, so don't hold back on that! Remember, your body temp is in the high 90s already and you're losing most heat through your head.
Sorry I'm not more helpful, perhaps others have experience with this! It's a great question!
Susan
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Thanks Cheyenna and Susan. I've sent the same question to Frank and to my PCC distributor. I will post both of their answers. Cheyenna, glad to see you're doing okay. Been following along with your posts and thinking about you.
Seems like a cold water rinse every day will be beneficial and, at least 2 or 3 nights a week, to put caps on in the evening for cooling. Sebm9, I agree about exercising and think it will do a world of good. I would just feel a little less concerned if it happened to be winter rather than summer.
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Hi All! I talked to Frank about the whole matter of getting hot and, as you might expect, it's to be avoided to the greatest extent possible. He said to stay in the shade or inside. He said when putting the infrared thermometer up to your forehead, the temp. shouldn't be more than 37 degrees celsius. Normal temp, he said is 32.
I'm still going to exercise. I just think I'll do so inside and at night and put a cold cap on when I get home.
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cmz: Thanks for getting this valuable info! Very helpful to know!!
Susan
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Hello Cold Cap Users!
I love reading everyones progress! And so happy everyone is helping each other! It is so hard trying to keepin touch with everyone all the time! Cheyenne-Frank told me once to just let my hair "Blow in the Wind" so don't worry about it blowing away! LOL!
As far as keeping your head cool-I know it's hard in the summer but as long as your head doesn't get all hot a sweaty where your pores open up. You know our hair is trying to hold on-be careful. I had my chemo last summer and I did put a cap on (just out of the freezer) when I wanted to tan on my patio when it was really hot (even though your really not suppose to sit in the sun to long on chemo! Ha) Or I would put my lounge chair in a position where when I laid back my head was in the shade and my body was in the sun-crazy -I just wanted to get a little tan going! And just one more thing if you have a pool! I thought if I kept my head cool in the pool-but NO-you don't want a reaction with the chlorine and the chemo-bummer. So I kept my head out of the pool water.
And YES-you can get PCC just about anywhere in the world-they are used in other countries so just contact PCC site.
Good Luck to All-your in my thoughts and prayer! Geralyn
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Hi Geralyn,
When you pull a cap out of the freezer and put it on at home, how long to you wear it before changing it out for a new, cold one?
THX,
cmz
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CMZ thank you, not so good today, i am running a fever 99.6... 8 days out from first ac tx im worried, im not sure why, i hope i dont have to go to the DR cause its not a good place for me still. in that i mean i have a hard time emotionally being there..i took tylenol in hopes it goes down. i have a small sore i think on the side of my tongue so im using the salt water rinse. its not bad but i can feel it.. oh! i wear the caps at home as well when im in the heat, i dont wear the chin strap just the Velcro tight around my nape and up around my forehead, (its more comfortable this way) it keeps it on nice and i change it when it does not feel cold on my head anymore about 30 mins but depending on the temps outside. I hope your doing good,thanks for chhecking on me
sebm9, thanks i hope it balances soon, i feel i want to itch it all the time and am worried ill scratch my hair off..lol
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Hi All,
This thread has tremendous information, both in terms of quantity and quality, and has passed its first birthday. I am hoping that people who used PCC would summarize what they did that worked wonderfully well and what didn't work as well and you would do differently. I was thinking this might be a new thread -- but I'm not sure of the rules for starting them.
Some things I am wondering about:
How easy/fast is it to refreeze the caps duirng the chemo treatment so that fewer caps are needed?
How much dry ice is really needed? The amounts people purchased seems to vary greatly.
And any other information an obessing almost-to-the-chemo-part-newbie should know.
Thanks,
Colleen
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cmksocal:
We followed the instructions by the book, and kept the caps in the plastic containers when in dry ice (we put them in ziplocs in the freezer between use, due to space). We always kept them frozen. Because the containers take so much room, we used 3 igloo coolers with caps evenly distributed. We used 100 lbs. of pellet dry ice (14 caps), and put the ice in a number of ziplocs (not closed all the way or else as the ice 'melts' the gas will burst them open) for easier maneuvering. Ziplocs of ice were evenly distributed: bottom, between, etc. We found that the caps on the bottom of the coolers got very cold. We usually needed about 45 minutes to thaw the cap to my temperature (which was -35, colder than many folks I think), but the ones at the bottom of any cooler needed more towards an hour of thawing to warm up to -35.
It's very easy to refreeze caps from early in the session and use them later on; they only need three hours in dry ice to get cold enough.
We learned from Frank (just before my final treatment) that it's best to store the caps in the plastic boxes with the white outside; the cap chills/thaws faster that way. If, when you are thawing, the cap gets too warm and you're not ready to use it yet, you can tuck it up the other way (blue outside), put it in the box, and dip it back in the cooler for a bit to bring it to the right temp. Much easier to get them colder than to thaw them, basically!
We got pretty fancy with the three velcro straps to customize the fit. I have a little thinning around my right temple/side burn -- above the ear but maybe only 1/3" in width -- where we could never get the cap very snug somehow. Did not have this thinning on the left side, but it's not noticeable the way I wear my hair and even if I wear my hair up it doesn't stand out. I really thought I'd lose hair at the nape and behind ears, but didn't. My shedding has been general, all-over thinning. The rest of my body hair is another story! Some of it I really miss!
I went to the Giants game tonight and ventured my first spicy food in months, a bbq chicken sandwich. It was mild, and tasted funky because everything tastes funky, but I could taste enough to be happy and it didn't mess with my tummy so I consider it a milestone. My nurse said I can begin slowly introducing my favorite foods as I feel, and that my taste buds will be a pretty good indicator of what my GI system is able to handle.
cheyenna: I went through the first three treatments with baking soda gargle, and finally got curious and tried Biotin, and wish I'd tried it sooner. It's slimier and makes my mouth feel much more soothed. I didn't get sores but got extremely dry and a white, fuzzy tongue a couple of times, esp. about a week after treatment. (My nurse said sucking on ice cubes during infusion is helpful but with my scalp so cold, that was the last thing I wanted to do!)
Susan
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Hi all,
We actually had kept the caps balled up like they are in the containers but we kept them in the "plastic wrap" that they came in and put them in the cooler that way. We used one large cooler this way and the caps placed between layers of bags of dry ice. The temperatures were somewhat different but we got so we could try different caps and use the one that was right for that time. I will ask my husband how much dry ice we bought each time.
Hope this post makes sense - I am still on Vicodin from the hernia surgery...
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Hi cmz! If you want to do Stimulation Therapy to help your hair grow back quicker. You take the cap out of the freezer (NOT dry ice) The 1st cap wear 20 minutes the second cap 20 minutes and the 3rd cap 20 minutes. That's it. I am sure it wouldn't hurt if you wanted to change them out longer (not sure you would! LOL!) but change them every 20 minutes because they are not as cold and warms up quicker.
cheyenne-Hope your not getting sick! that's how my sinus dranage started-a little fever and a scratchy throat-then post nasal drip for a month! Lot's of coughing and blowing not I didn't feel sick after the first few days. I am sure your doctor will check you out. Remember don't worry-it may produce lactic acid and is bad for your follicles!!!
cmksocal- the only reason I wouldn't want to take fewer caps than suggested is because you never know what can happen. I had a reaction once and they slowed my drip down and it took an extra hour and a half-plus there could be all sorts of delays. Once you start the caps you have to keep changing them till your done with your post chemo time. There were times when it was hard to find a cap cold enough at the end of my time even though we were refreezing them. When the caps warm up and go back in the cooler it can warm up the cooler or a freezer up quicker. It would be a shame to run short at the end.
Anj7-Hope your feeling better after your surgery! ((HUGS)))
As far as dry ice goes-there isn't the exact same amount for everybody. It depends on how many caps you have-how many coolers-the size of the cooler etc I guess everybody has to figure out their own.
Have a Great Week!
Geralyn
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Hang in there, Cheyanna. I'm cheering for you. You are so pretty!
cmz
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Hey PCCer's! It's official! I survived my first of THx12 treatments...caps, hair & all! Thank you everyone for the wealth of advice and knowledge; I couldn't have done it without you. The fear of the unknown definetly was the worst part (ok... the -30 is pretty bad too, but it goes away after about 3-4 minutes) haha! Round #2 coming up Tues. and I haven't had ANY SE's. I went to work on Wed-Fri. and felt great. I'm sure at some point the SE's will catch up, but I'm prepared for them. I'm so proud of my cold cap team, they worked like champs! They impressed everyone; they aren't about lose this battle of the hair! haha! I've had slight shedding, but nothing more than what I would consider normal for me. I had taken advice, and put "shedding" in a ziplock bag prior to the start of chemo as a "level/marker" to judge my post chemo "shedding" by. This has help me not to panic thus far. I hope this finds all of you other PCC users feeling well and staying "cool"...keeping you in my thoughts and prayers!
Stay Cool!
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cmz,thank you, though im not feeling too pretty these days.lol, all is good, they sent me home on antibiotics, not sure why im having a fever but blood work is all good
so im not gonna give it a second thought, full speed ahead!!!Sebm9,thank you, i got biotin and the tooth paste,and now that sore is gone
amazingwell, i learned that when we r on chemo we wont get sick like everyone else. when our counts are down, thats why we have fevers, we wont cough or that kinda stuff, just get fevers. thats what the DR told me and why its so important to come in, he said the cells makes us cough when we r sick to fight it off but when we dont have enough to fight we get fevers and no cough, i find that interesting
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GAgirl01: Congratulations! The first treatment is a pretty good indicator of how you'll fare; I had itsy stuff here and there but nothing that didn't quickly resolve, and nothing disabling or debilitating. I was showering after my swim tonight and dutifully put a few strands of hair in my gym ziploc, and thought "When exactly are you gonna stop doing this?" Probably at the end of next week when I feel I've cleared this final round for sure. I'm almost at the chemo finish line in that regard!
Cheyenna: glad the sore is gone! Would you believe, I just had my first one? I think it might have been the bbq I had yesterday at the ballpark. It was worth it!! :-)
Susan
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cmz--I want to make a correction on the Stimulation Therapy. It is not 20 minutes x 3 times. It is 35 minutes X 3 times. Sorry! the 20 minutes X 3 is for migraines! Oh yeah- did I mention they help migraines?! Geralyn
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Hi Geralyn,
Thanks so much for the correction. I'm sure everyone will find this useful. So 3 caps for 35 minute each. Good to know!
cmz
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golfergirl I do feel like I'm holding my breath during the danger zone! Day 19 post TC #1...
cheyenna hoping you're feeling better and better. I had four little canker sores for several days that really bugged me, no matter what rinses I used, but I liked the Biotene because it dissolves biofilms (plaque), and I really didn't feel much like brushing my teeth diligently.
cmz I'm wondering if Frank misspoke about 32 being the normal forehead temperature. That's only 89.6 fahrenheit. Now, of course, I'm obsessively temping my forehead ;-). It's always around 34-35.
drim hoping you're not being hit too hard with the SE's.
ang gentle post-surgical hugs to you
cmksocal I have sebm9's caps and am trying to do everything exactly like she did, since she's having such a great result. The only thing is my hair was already thinning to begin with, so I don't use as low a temperature as she does. Remember not to inhale deeply when opening the coolers, so as not to get a lungful of carbon dioxide.
Had a little shedding while doing my light daily combing--but it was less than 20 strands. The area above my forehead that got frostbitten peeled some big chunks about a week ago, but still seems to have good hair. Lots of hair loss on the rest of my body, I see it on the floor of the shower, but so much body hair still remains that no one else notices.
Yesterday was hairwash day. Gosh, I hate the cold water! I go through all sorts of contortions to keep it from splashing on the rest of my body.
Next infusion on Thursday. Aargh. I'm dreading it. At least it goes by quickly with my traveling cold capping circus!
I LOVE that no one can tell I'm a chemo patient. For instance, I can be out and about and a helper in the store can ask "How's it going?" without it being some big deal.
Happy Hair Days to us all!
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ordinarymammal, Congrats! You are going to make it through, I know! I will be thinking good thoughts on Thursday and sending them your way. It is wonderful to not be viewed as a chemo patient. I finally started using a little brow pencil on my brows so that there really are no indications. Having my hair throughout treatment (not to mention just the victory of proving all the doubters wrong!) had everything to do with my attitude and stamina, not to mention how I'll be able to proceed -- with head held high! -- in my next phases (radiation, tamoxifen).
The fatigue in my legs seems to have tempered - I have spots where I feel pretty good, others where I need rest, so I just listen to my body and rest (and then when I'm rested, I go swim and lift weights and hike 2 miles
). Cheers,
Susan
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Ok, im on day 11, my next AC is friday and im getting nervous, for my hair, not my body, lol scary....
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Hello to all. I am just about 4 weeks past my final chemo (TC X 4). I also still have a full head of hair. At this point my eyebrows are starting to come back too.
For those of you who have been experiencing frost burn on your scalp that results in peeling and/or heavy flaky dandruff: I found that wiping the inside of the cap with a terry cloth towel just before putting the cap on my head solved that problem. Apparently any moisture condensation in the cap that dampens your hair really transmits the cold directly to your scalp. It was a relief to not feel that burning sensation and then wonder if the peeling would result in a bald patch. One less thing to be stressed out about.
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Newbride,thank you, im flaking like crazy and am freaked that i will have bald spots there, im itchy too? that is a worry as well?0
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Chey, My flaking freaked me out pretty badly but I'm happy to report that I didn't end up with any bald patches. I still think wiping the caps thoroughly before placing them is a good idea. If you can avoid frost burn in the first place that's got to be better. Right? As for the itching, I think mine was more related to not being able to wash my hair more than twice a week. I also had a creepy scalp crawling sensation. That was mostly after my first TX. It had me more worried about my hair than anything else. It started about 14 days after my first TX and I was just sure that I was going to wake up with my hair on my pillow instead of my head but the cold caps did their job and everything is okay. I think you mentioned peeling on your forehead. Are you using anything to mask/protect that exposed skin? Dr. Scholl's or CVS brand moleskin worked really well for me. I just cut one in half and applied it in the bathroom at the infusion center right before they would start my IV.0
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Things are falling into place. My chemo (TC, 4x3weeks) begins next Tuesday, July 6. I spoke to Frank on the phone -- really when does this man sleep. It was 2:30 AM for him; I planned on leaving a message. I am planning on picking up my caps on Thursday -- the facility is only about an hour from my house. My husband and I will practice cooling caps and putting them on over the weekend. He asked me to find out if there is a special type of glove for handling the dry ice?
I am so ready to get this process started, and over.
Colleen
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