Cold Caps Users Past and Present, to Save Hair
Comments
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phaila - I haven't seen your head, but I don't believe them - if it were not working, you would have huge clumps of hair falling out and you would be nearly bald by now, according to the non cappers. I have shed throughout and am at about 50% doing "everything right." But when you start with a lot, 50% is still pretty good!
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I think I'm at 50% now. No bald spots just continuous shedding. My hair was so thick in the beginning I think my scalp was totally insulated. I really didn't feel the cold at all. This time we went much colder and wrapped my head like a mummy! Just hope it's not too late to save what's left. If I have another drastic shed at the next day 20 it's all over for me:(
Stupid thick hair. Right now I can't stand anyone with hair😡
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Tshire- your wedding pictures are absolutely gorgeous! You are an inspiration to all of us on the board! Thank you so much for sharing.
Phalia- I am just thinking out loud, but maybe when your hair thins, you will start feeling the cold more and then you'll hold on to the rest! That's my hope for you :-)
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phallia- why are they saying that? Has your hair loss slowed down? You're past 21 days now. Do you still have hair
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Phaila - my head was really cold from the start - the deep breathing for the first 10 minutes kind of discomfort - even more with thinner hair - and our caps were at -34 ( and colder I suspect) with caps on really snug - so a not cold enough sounds like it may have been the issue.
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The trial at our hospital is not having great luck with AC capping... Biology seems to be at play with the few holding their hair. But those that stick it out are getting regrowth twice as fast or even during the taxane phase. Took me four months after ac plus t first time to go without a hat after not cold capping. I am sticking with it this time to fight for those two months even if it goes.... Worth it in hot humid Ohio summer! Hang in there!!!
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It wasn't cold at all to me. But now that it seems like I lost like half my hair now, it really wasn't that cold this chemo either. I think I just have great cold tolerance. But I know that the first time my hair was so thick -I never realized how thick until it really counted right;( - that my scalp was super insulated. this time we made caps much colder.... I'm just bummed. I guess there always has to be a failure out of all the successes. Because of all your successes is why I did this... I guess hopefully the regrowth phase might still work out. I'm gonna hold out as long as possible. Got a script today for a wig. God I hate wigs. I stillhave half my hair with no bald patches. Every combing is just handfuls of hair😢😢😢
I'm terified to take my next hair shower!
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Remember pioneers took a few showers a winter.... Saturday nights. I m going for baths, every other day, rinse hair only then light conditioner and water mist for cooling.
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Phallia- I did everything right and I still have some small bald patches on top of my head. I was really upset but I still have a lot of hair and I found a way to cover the bald spots. I'm hoping for early hair regrowth and hopefully the same color will come back. If it comes back grey it will look really weird!
Did you wet your hair down at your first treatment? If I remember right, you didn't but I might have that wrong. If you didn't, that could be the explanation for what's going on since you have such thick hair. Are you still shedding a lot or has it slowed down? I lost a lot (maybe 10-20%) between day 22-26. Now it's normal. What day are you at? Hang in there. In some ways I think shaving my head would be easier so I don't have to watch all this hair come out but then I remembered that some hair is better than no hair. And it got better. I can tell but no one else can.
She asked if every cycle has heavy hair loss at around day 18. Can anyone answer her question?
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7of9, what kind of caps is your hospital using in the trial? The "machine" type? I know the temperature of the machines is not nearly as cold as the -34 we use for Penguin cold caps, and they only do 1 to 2 hours post chemo, not 4. So that would probably account for more shedding or less success with AC
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Hi runner70, with penguin caps you aren't supposed to wet hair down. I do t know what the theory is behind wetting or not wetting. I emailed all cold cap companies asking them about why you wet or do t wetbut no one had an answer for me
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patin M...I believe they are using penguin and some of the women seem to be getting to take them home after or bought them because my "coach" told me to follow the full penguin routine and wear them home from the hospital changing on the roadside when its time. I didn't qualify for the trial nor would I risk being assigned the non cap group so I went with elastagel. I honestly would run my husband in any horse race with a nurse assigned multiple patients as he managed two coolers, dry ice, his laser thermometer he got from Sears, set his timer for twenty minutes per cap and wouldn't let me go past 25 min til after we were home an hour.
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I sprayed my hair with half filtered water half leave in conditioner. Wore two shower caps and it was still wet when finally done ...
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You look amazing tshire!
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Cold conducts better via a water medium. I'm guessing Penguin probably doesn't recommend it because their caps hold the cold and get so very cold to begin with.
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Hi Cappers,
A/C has kicked my butt from the first day. Vomiting started 2 1/2 hours after chemo, nausea, migraines, shingles on my face, etc. I'm on day 25 and have my 3rd A/C on Wednesday. I had long, thick hair. Wore the caps for 4-4 1/2 hours afterwards. I've lost around 40% with my heaviest shed this past week. I carefully cut my hair to a bob and am looking at wigs. I'm afraid if I continue that my scalp will get frostbite. Plus, the cold makes me nauseated. I'm trying to hang in there and going to cap this 3rd round. Still have taxol, but praying we get along better.
The shedding has slowed down, but it is still falling. Here is a pic of what I lost and what's left. (Ignore the scary face and oily hair. It needs to get washed, but I'm holding off.) Do I keep going? I lost more than that, but it's in the trash.
Hope everybody is doing great and hanging in there!
Cheers,
Michelle
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AC isn't called the red devil for nuthin. It's like its pissed at you for fighting it so hard. I have heard the hair loss can slow down after 28 - 30 days. Hey, are they giving you iv pepcid and amend? You shouldn't be puking. Also are you taking zofran every 8 hrs? I got so mad at that chemo that I started wearing red shirts and ate red popsicles (toro!....ole....biatch). You are more than halfway right? So you have this week and the nect treatment then done. Talk to your doctors about the nausea....the iv meds are supposed to get you through the first 8-12 hrs easily then you should drink enough to flush your system down to levels that the dex and zofran can keep at bay.
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MB12 - I'm sorry to hear that you're having such a hard time with chemo, I had the same experience the first time around. I just couldn't get on top of the vomiting, nausea....definitely talk to your team so that they can adjust the meds if possible. Drink tons of fluids to flush it out!
In my opinion, I think you can carry on with cold caps. As long as you can fake it, carry on. That's what I think.
It's hard to say how much I've lost, percentage wise, but my hair has thinned out a lot! I'm using these colored keratin fibres to create fullness and cover the bald spots. I found the shedding slowed down a lot for me right before my 3rd round. I just completed round 5 last week. Im on taxotere right now, and I've heard people have a better time on taxol.
When I did chemo in 2009 it took so long for my hair to grow back to the point where I didn't need a wig (my comfort level anyways). So I figure even though I have little hair, it'll help once hair starts to grow back and I'll have a head start.
Plus, honestly my father didn't even realize that my hair had changed. He was surprised I still had hair when I saw him and I was halfway through treatment.
Good luck, and I hope it gets easier for you.
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MB12 - feel so bad for you - chemo sucks and royally so for some. I had a hard time with it, too (TCH) and AC is even worse, so I really feel for you.
Even though you've lost a fair amount per the bags of hair pic, to me it looks like you still have good coverage left. If you've got it in you, I would try to continue cold capping. Most say hair starts to grow back on taxol even without capping (and it is much easier than the AC part for most, per reports I've read over the years). You've already invested so much time and $; I certainly don't think it is a lost cause.
However, if you are spent b/c of your tough AC ride so far and just can't bear to think of doing more capping, that is certainly understandable. We support all choices - to cap or not to cap - on this thread! Hugs!
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MB12
I had a terrible time my first A/C with nausea. I made my onc come up with another anti-nausea medication combination to make the capping day more tolerable. My second A/C infusion day was soooooo much better. I get Aloxi, emend and ativan in my premed drip. This time I got all three of those PLUS Xyprexa that I took in pill form orally the morning before my pre-med drip. It was very sedative and I was actually falling asleep in between cap changes and only started to get a little nauseous on the last two caps. ( so they told me to take an oral ativan then) I do all capping at the hospital due to the rapunzel freezer there. I slept the entire night through afterwards as well. I think the Zyprexa is the key for me. You should ask your doctor about it. My hair is shedding a lot too but so far so good. Just FYI my take at home meds are Decadron (steroid), Xyprexa (once a day 3-5 days), Ativan (as needed). They took away the compezine I tried after the first A/C session.
I hope this med tip helps.
ILoveArt
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MB12 - for the frostbite, try a strip of gauze on the bald patches and charngeyour part with each cap change. I got frostbite in one spot after my second infusion and doing the gauze and part change prevented it in future infusions and was way more comfortable. Good luck!
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Hello Ladies, 😀
Thank you for all of the encouragement! I'm concerned that I will not be able to tolerate the cold w my hair this thin. I can feel coolness and my scalp so easy with my hands, now.
Should I wear a moleskin?
I only vomittted after the first infusion. It was a ripple effect that day. 2nd time I had plenty of anti-nausea meds to try and in my system. I get it in the IV, as well. I'm just super sensitive. Everything gives it to me. Will ask about the Pepcid and other med, above.
I did have them slow my infusion time down. A friend's mom had the nurse give her it to fast and it scarred her lungs. Slowing it down did help a little. Nausea kicks in 2 1/2 hours later no matter what meds I have in me.
The shingles really set me back and the trip to ER. The shedding is driving me crazy. I will ask about all the meds listed above and will try to push through. 👊
Thank you so much for the help!! 💗
Cheers,
Michelle
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Michelle - I had AC too, and shed and shed and am still shedding - and am now just done dose 3 of 4 of Taxol and was really excited to feel stubble at the back of my head! I must have had a quite thin area that I didn't know about, and now there is a patch of hair a few mm long! It is so weird because my head was really sore in that spot the last time we did capping, and i thought it was maybe a pressure sore or frostbite, but now there is stubble. Pretty sure it is not broken off hairs because they are so pointy feeling. Mind you, don't have it on the baldy spots in front of my ears….
My premeds were Aprepitant ( Emend) and Ondansetron ( Zofran) and Dex, then two more doses of Emend every 24 hours or so and another dose of Ondansetron that night, with a breakthrough of something - ?stemitil, I think.
I would stick with it. I put gauze over a spot that was thin one time, otherwise just shift the part and use moleskin around the edges.
Karli
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Thank you, Zinny! I will bring gauze and check out the meds.
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so this isn't even a days shed this is just my morning wake up comb. I'm at day 26 and this is the normal everyday PLUS. Waaahhhhh:(0 -
Hang in there, ladies!
We are our own harshest critics.
MB12 - I can't imagine that the loss you see is 40%. You still have coverage and no one outside your inner circle would know.
Phaila - I had similar amounts in my sink. It always looks worse when loosen.
I had dose dense ACT and still had coverage , one thin spot that needed to be covered with a wide headband but I never needed a wig. I know not everyone is successful with ACT or other treatments but the hair loss looks worse to you than others.
Best wishes ladies!
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About the hair loss... Instead of focusing on the hair you're losing, concentrate on the hair that's still on you head. If you were in a room with a bunch of strangers, would they think your hair looked odd? Remember the goal is to get through chemo without needing a wig or other head covering. You will notice that your hair is thinner, but others won't.
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I am looking into a wig back up. Has anyone seen a Jon renau zara wig in person? It's close to my original hair. Wonder how much insurance covers of the cost??? Any ideas
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phaila: I have not started chemo yet and went to three different wig stores in Boston, MA and I liked the Renau ones the best. In my opinion, they look better than most hand tied, human hair ones and are more easy to care for. Most major insurance companies cover at least $300 for a cranial prosthesis.
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I have my "back up wig ready" but I have plenty of handy dandy lint rollers ready to get loose hair and throw in the trash without looking. I still have to pick up satin pillow casses, not sure how big of a deal those are or not. Day 5 post 1st Taxotere and nothing falling yet though i went with a very casual short style and only try to run a brush or fingers through 2 x MAX 3x a day. Usually 2 x. I am looking into some mild bath soaps to soak in a few times a week and my plan is just to dunk my head under water as it cools off, swish around a little and that's that. Guess shit gets real in another week or two. I must say the taxotere, neulasta, and or the cold capping seem to be beating me up worse than AC did 4 years ago. Then again I had a 2 year old who napped and I didn't work 25 hours a week. Hang in there all..
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