Cold Caps Users Past and Present, to Save Hair
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Runner70, Thank you for update. I am glad you over with this! Congratulations!! It seems that bold spot it something that comes with elastogel caps:( btw, you are my role model. I read an article about you and you are great! Way to go girl! I am taking you as an example and been running a few days a week the other days I go and exersise in gym.
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sheri-ct-
Can i ask what your rash looked like and where it was/is?
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Patamn-that is VERYscary!
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hey ladies, I don't post much but I want to give any encouragement to you guy cold capping. I was in exactly same place a year ago, worrying about shedding. I went through what seems like forever of chemo, 6 months of ACT and carbo. Thanks to cold cap and my capper (husband); it made getting dx with cancer at 32 so more "normal". I lost about 30% of my hair but nobody in the office noticed. My MO didn't think I will keep any of my hair because the chemo, but I t worked
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My caps (elastogel are going on at - 16 to - 4 and are coming off at 27 - 38. 20 min x 2 or 3 cool down prior to treatment. for an hour plus. 25 min throughout treatment one hour. 25 - 30 minutes post treatment for four hours. Was told I only needed 3 by the company. ha. 4 I think is minimum. I already lost too much hair being loaded too low on dry ice first time (only 35 lbs - guy told my husband who picked up it was plenty though I TOLD him we needed at least 60). My goal now is to keep enough bangs and mullet to get away with baseball caps and help trigger regrowth faster.
We had 55lbs today. Screw it. My husband doesn't listen. We did add bags inside each cap as well as them sitting on 30 - 35 lbs. Bought the ice the morning of so it was super cold. Our laser thermometer actually stops reading at - 16 so probably colder. We used winter head bands over the cap to get it tighter on the crown plus a stocking cap over to hold in the cold, and the the warmest the crown part ever got was 32 at take off with frost on the outside of the cap under the bands. I was not willing to gamble $1800 plus ice on penguin and did cheap out on $400 plus ice on the elastogels. Bonehead insurance needs to start covering part of the cost! Bought plane tickets for my son's first airplane ride later this summer with the difference. I want my hair....but I guess I want to take my son, husband and I to see the Pacific Ocean and Yosemite even more.
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Well said, Runner70. We are all earning badges of courage for this. (Also appreciated that you'll fit in at the fair or prison -- got to keep the humor!) Congrats on finishing chemo. And where can we find this inspirational article about you? I'm pretty beat down at the moment (Neupogen), but would otherwise be dying to go jogging... were it not for a weird hip spasm keeping me down.
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Thank you victory and SacCat! I'll post the link to the article below. Ignore the typos, I did not write it! Lol. I was contacted by the reporter this week to do a follow up story. It got a lot of FB shares so maybe that's why. It completely gives up my anonymity but I'm ok with it if you guys are! I'm still running but chemo #3 did me in! I still walk about 15 miles a week with a little running mixed in. Im just trying to control this beached whale look that I feel like from water retention. Ugh. I want my old body back! And thank you decadron for waking me up at 4am today...
7of9- I think you're putting your caps on too cold. They are supposed to go on between -30 to -35. If they go on too cold they aren't pliable enough to get good contact on your head so gaps form. The gaps cause the bald spots. I doubt all is lost though, I would keep doing it. I rented my equipment and today I'll be packing it all up and shipping it back! Yay! No more dry ice hassles! I felt so silly ringing the bell yesterday after my last chemo but I really wanted to ring it. I I'm the only one capping there so no one in the infusion center knew what I was doing except the nurses. Everyone was staring at me! Too bad I couldn't ring it before the capping
I haven't shed yet from #3 so it will be awhile before I know how it turned out. It seems to have overall really slowed down. I'm getting about 1-2 inches trimmed off in 6 weeks no matter what. I'm so over the "troll hair". Phaila, my oncologist loved that phrase! I haven't had a trim since February and the ends are just awful and frayed!
Here is the article. The print version had a much cuter pic of me running with my pace group!
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Runner 70, I just woke up and feel lazy.. I am on MFLA till end of this month which is a blessing...not to go to work during treatment ( even though I still do some work from home) but I see your reply it's encouraging for me to get up and exsersise. So, once I drop my kid to school I am off to run or gym. I can't run full 5-4 miles now but I mix run and walk..... I am on weekly Taxol and it is not as bad yet as other chemos. Plus I am I only past #3 Still didn't add up. So I keep telling myself, I can do it. Just move! You are great, girl!
Do you mind posting a picture of your final hair result? Anxious to see how It looks.
It' s my weekly wash day today.. Once I am back from walk..will do it. Hope it's still too early to shed.;)
Also about water retention I still didn't retain yet and beating so far wait gain with exersises...when is water retention started for you? I am planning to ask my MO next week if he can reduce steroids a bit.
Since I am on 12 weekly Taxol doses I have to freeze my brain more times then most of you..
( so 9 more to go! Hope it works...0 -
Runner 70, today is my 4 of 4 and it's also the day of number 3 shedding and I'm shedding a lot:( I'm trying to decide if I can get by with mild troll or I need to brush it. I'm only going to chemo center and walking out with that coldcap on I look like a lobotomy patient so messy hair can't be worse right?!
When I first learned about chemo the dr said I would lose my hair hair but I could get a wig. I said I could never wear a wig! I'd look like a hooker... He said I've never heard that one:p I'm that kind of person that if I wear makeup or try to get fancy I only look like a street walker! I dont know why😜
Ps. My feet ankles are sooooooo puffy and swollen! And my muscles are like jello. And my back pain during week 3 was unbearable. I actually couldn't hold my body up my legs were so in pain and weak. I dread number 4 AND I'll have an out of school 9 year od to entertain:(
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Runner and phalia congrats on the last chemo!!!!!!! you made it!!!
I had TC #3 (of4) yesterday, and even though everything went smooth and easy, for some reason it was the toughest so far, I was really fatigued and swollen yesterday, my port feels tender and my mouth is starting to get tender as well... so staring up with all the meds to control it and hoping for the best.
shed from chemo 2 was not bad at all, so im dreading shed #3, specially hearing it was bad for you phalia, I have more or less followed your shedding pattern, but you started with way more hair that I did, and I don't know if I can have another big time shed, I would end up bald... oh well I just have to wait...
keep us all posted on your regrowth!! and best of luck to everyone!!!
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Runner70 - congrats on finishing chemo! And great article!
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Yay Runner70! I am anxious to hear how you are doing! I know I have seen stuff on this here and there, but curious about thoughts from the group about anyone who started some styling sooner that the recommended 3 months (or gentle coloring). It seems like the rules are pretty conservative, and that makes a lot of sense, but curious if anyone had success with trying some things sooner. As Runner70 said, the "troll hair" is getting so old!!
Also, for the group, I finished last week with 4 rounds of TC. Had pretty good results with penguin and did some illegal pony tails throughout... Still shedding a lot, but still have probably 85% of my hair (with some concentrated shedding above my ears where I don't think the caps were that cold or had great contact).
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well Cassie, I have sweet tickets to the Thunder versus Warriors playoff game Sunday and I'm styling my hair I've decided. My seats are so good that I may end up on camera. And I'm using my Toppik sprinkles. I've only used them once and they work great! At the same time, I don't want to go through all this trouble to keep my hair only to blow it by screwing up now so I'll be careful!
Victoryak, I noticed the abdominal and facial swelling after my 3rd chemo. None in my ankles. My belly looked huge and no matter what I did, I was short of breath and everything I drank went right through me. I ended up going in for labs and getting a liter of fluids in my port. It got my heart rate down and I felt better. I'm pretty sure this will happen again next week so I'm trying to get ahead and really hydrate well starting yesterday!
I feel so puffy and gross. I saw a pic of me my friend took and I look pregnant and 10 years old. Hopefully by the end of summer I'll look Jess weird. Having no eyebrows doesn't help any.
Take care guys.
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Cassie-85 percent is AWESOME! Congrats on finishing. I just did number 4 today. What should I expect from the se this round? Round 3 was a bit annoying with back pain and uber fatigue. Is 4 way worse?
Thanks!
Vicki
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Runner...I was going to skip ringing the bell for me since this is a recurrence and I figured it didn't work last time. Reminds me of ringing a bell at the beginning of a horse race or a boxing match and not the ending. Now you have me thinking I will have to ring it with my cold cap on and I should do it to bring more attention to and support cold capping. My original hope was to ensure my hair comes back, not just to keep it throughout.
There is a trial going on at my hospital with mixed results thus far. I would like to see even 1 - 2 women pull it off for every ten who tries. In a few weeks when it gets so hot and humid, if I can even hang on to my Tom Petty, Troll, Beetle Juice hair, I can keep wearing my baseball cap and earings and hardly get glanced at. Besides Taxotere gives me such a headache from day 3 - 10 I can't stand the though of a snug itchy wig!
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As I was walking out of my treatment center today wearing my cold caps I was cracking up at all the people looking/not looking at me. This one girl was just like full on side glare of wtf??! I just burst out laughing and said "lobotomy"
This can be fun I'm finding out:)
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Phalia -- AWESOME -- I am a lobotomy patient now too -- LOL!
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Aw, Runner70, you're my hero! And almost-twin! (Dx/age/tx/even similar names)
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Lobotomy! YES
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Labatomy! Lol . now you got me going!!. Here You go me right after #3 Taxol...Make up and botox done by my son...
When my friends txt me how am I after chemo... I just txt them back that picture... Well, 9 more to go....
Girls, you are fun! I am getting addicted to this forum.
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lady gaga....born this way. I'm on the right track baby I was born to be brave. Great song and video. Inspiration. Freaking weird.Freaking great.
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OMG viktoryak, that is AWESOME. LOVE. I freaked out the nurses a bit with my stuffed (vampire) bat on the IV pole, but YOU WIN. (Bat pics to follow)
And I agree -- checking in on you all is becoming a fun daily routine!
7of9, will check out the Born This Way video for inspiration too. And comfort.
Thanks for sharing and the great laughs!! xx
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7/9 what kind of a trial is being done in your hospital with cold caps , which company's caps are they using ? What chemo regimes ? How long do they cap for ?
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Positive Power....they are testing Penguin caps. I talked to one of the ladies who did it and she did do the 50 minutes prior, 2 - 20 minute caps, 3rd one on for 10 minutes then start chemo. Full four hours afterwards. I know at least one (out of how many I don't know) women who did AC kept most of her hair. Most I hear are losing it anyhow but it's coming back 2x as fast. Last I heard Taxol/Taxotere was having good results (50/50) but I can't confirm any of this. They are only doing first time diagnosed patients or I may have tried to be in the trial. Then again I wasn't willing to risk Taxotere and being in the half without any capping. 3 - 6% permanent hair loss scared the crap out of me. Not enough to pony up $1800 for Penguins but I did shell out $400 on Elastogels with some / limited success. I have Beetlejuice hair on top from not forming the caps to my head the first time through though I have enough bangs, scragly sides and hair in the back that I seem to get by with a baseball cap and hoop earrings and no second looks.
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Thanks 7/9 I know of a few ladies who did AC-T and Tax and kept hair as well with Penguin , but were very strict on regime 50 mins before and 4.5 hours after. Atleast you have done some caps and hopefully that will help you keep some and grow back quicker.
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I am doing AC-T and have followed the Penguin regime to the letter and still so far have lost approximately 60% or more of my hair by shedding. I have 5 more rounds of Taxol left not to mention I will likely continue to shed for awhile after based on what others have said. No blatant bald spots although my crown is so thin it might as well be bald and my hair is so thin you can see through it. I am completely discouraged and was led to believe I would have much better results. When it's all said and done I will have spent $3165 for cap rental (633 mo), $1024 for dry ice ($64 of 80 lbs) and none of which includes all the extra time, effort and discomfort. I also have a group of trained friends who help me who have had to take time off from work. Right now I am feeling incredible guilty for having taken so much money from the family budget with such little success to speak of. In my opinion and from a financial stand point, I gambled and lost on Penguin Cold Caps.
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Trixie16, I am so sorry about it. I understand how depressining it is. Don't feel guilty! You tried, you hoped. And as of friends... It is wonderful you have such great friends who can do it for you.
I will have round 4 Taxol on Tuesday. So far my hair ok. It's to early to say it works or not. I am scared of week 6 when nurse said hair will start to fall. I have many mood swings and sad moments and crying without loosing hair. I can't imagine a an emotional rollocoster it will be once it starts.
Are you on a weekly Taxol after AC? When did the shed start? Was it while on AC?
Girls, how do you deal with all this emotional pain we go trough?
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RE: the emotional pain
There is much stress, loss, and fear during cancer treatment and afterwards - caps or no caps.
Whether we make the whole experience better or worse for ourselves is completely within our own control of our mind.
The question is - can you step back from it and recognize you are being your own worst enemy? Can you then say - WTF? Why am I doing this to myself? Can you then open your heart to yourself and have compassion for yourself? And then get angry and say "I'm not going to torture myself anymore!!! NO MORE!!!"
When you finally cross that bridge you can then realise:
IT IS WHAT IT IS.
WHAT WILL BE WILL BE.
I HAVE NO CONTROL OVER WHAT HAPPENS.
I FORGIVE MYSELF FOR ANY MISTAKES I MAY HAVE MADE.
Then, you can just let life happen, and surrender to whatever it brings. It's very freeing, and a much happier way to live.
Be easy on yourselves, ladies.
Grieve whatever you have lost, but then refocus and be grateful for whatever you have good in your life.
Every night I try to focus on what I am grateful for, no matter how bad my day has been. Try it. It will lift you up and change your life.
These are the lessons cancer has taught me. Fear of death is a great teacher. Use this experience to change your life for the good.
Hope this helps someone.
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Dancetrancer, Thank you! It is great words of wisdom. I know we a bit off the caps topic her.. I try to change , it is very important now but it is not happening so much.. Of course with cancer we all change but change our mentality as you saying above it is very hard, at least for me. Maybe it is not enough time of my new cancer life passed by yet...I am sure I will be able to learn how to deal with it eventually. But now it is hard. I see friends planning vacations, coloring or complaining about their bad hair day (ha ha.. their bad hair day).. and we are here in a different world. I had 2 couples over at my house for singing and dancing yesterday (felt like i need some entertainment after staying home whole week being depressed on and off) and I noticed at some point i am not there with them. I see them like from a side, distance... I was ready to cry for no reason...Well, as you said, I should change.. learn to appreciate every minute not to feel pity for myself.
Back to cold caps topic...:) It keeps my mind off, for now, from thinking about the rest. It is a great destruction to concentrate on the hair .....
My husband is a caper, he looked another day at my hair and I said, " why you looking this way at MY hair , it is still early for them to fall"... He said," Now it is MY hair.." (after 6 hrs/ change every 17 min caps.. I guess, it is more his hair now)
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