Cold Caps Users Past and Present, to Save Hair
Comments
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I would be very interested in renting them,leetasun. I am actually in southern Ca., will be starting chemo in October. We will be in the bay area, when do you actually end chemo? My hair is long and thin, not sure if this would work but I'm willing to try anything not to be bald!
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dawn84,hi what treatment r you on... the caps do work
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I will be on Taxotere/Carboplatin/Herceptin, TC every 3 wks x 6, then Herceptin every 3 wks for a year, my hair is really long, but thin. I'm soo sad about having to lose it, and I know the treatment is completely necessary so I shouldn't complain about my hair, I just feel completely out of control about everything else!
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Hey dawn84~
That is the same treatment plan that I was on and I only lost hair right by my ears.
Good thoughts coming your way...
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Dawn 84- I am also on the same regimen and had my 2nd tx yesterday which went great. Caps are cold pretty much for me for the 1st minute of each but very doable and worth it.. I have yet to lose any hair, bare minimum shedding. I lost more when I washed my hair everyday. Now I am only washing with a ph special shampoo every 4 to 5 days. I chose an onc who did clinical trials on the caps with a very high success rate of 80-90% depending on tx type so he actually bought a freezer and his own caps and I pay $200 for every treatment which is much cheaper than having to buy dry ice, coolers, etc. PM me if I can help any way
Ang7- At what point did you lose the rest of the hair on your body? I have yet to lose any so I am fearful that my time has yet to come with my hair to start really shedding?
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Where does one buy Cold Caps? Can you tell me more about what it is?
I meet with my Oncologist on 10/6 and will find out what my Tx plan will be.
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Emster~
I started losing hair from "other places" between my first treatment and my second treatment. I started my chemo in December and my oncologist told me I would be bald for Christmas. I was not. Try to keep the faith...
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Ang7: Thank you so much. I have had nothing fall from other places yet. Did you feel that SEs got worse with each tx? Not been too bad here..
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I'm not sure when I started to lose body hair -- it may have been just before or just after my second chemo treatment. That said, I've just had my third treatment (so it's been almost 7 weeks since my first chemo) and I'm quite sure I haven't shaved, or needed to shave, my armpits or legs for at least a month. (And I do have a full head of hair, though I am shedding more than I used to before chemo.)
I've had half the chemo treatments I'll need (3 of 6). I'm wondering about others experiences with the side-effects of chemo (specifically taxotere, carboplatin, and herceptin). My sense is that the side-effects may be worsening each time but only slightly. And they've been somewhat different each time, perhaps as a function of what I've eaten, what my schedule is (do I have anything that demands that I be up and energetic or can I give in to fatigue), and the extent to which I've chewed/sucked ice during treatment (preventing or lessening mouth side-effects).
What have others experienced?
Best wishes,
Katherine
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My SE's did seem to get a bit worse each time. The absolute worst one was the third one but I did not want to drink anything so I really messed myself up that way. I drank a bunch with the fourth one and it was not as bad...
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Hi everyone,
I was TC x4@3, Some SEs I only had with my first chemo -- a few days of acne, flakey dandruffy hair, and some hip pain about a week after my neulasta shot. My chemo was during hayfever season so I was already taking claritin, but the first chemo I also took one tylenol and my hip pain went away. I never had bone/hip pain from neulasta after my other chemos. Other SEs were mild but had kind of a pattern: usually a bout of diarrhea about 7 days after chemo (quickly cleared by Immodium), sometimes a tinge of queasiness about 3-4 days after chemo (and after my two days of Emend were done), but I took a compazine and was fine. I did have a pretty grand headache after my first chemo, but probably a combination of chemo/brain freeze from the caps/going off caffeine. (I've stayed off caffeine, something I've tried to do in past.)
My most noticeable SE was towards the end of the Chemo 3 cycle and into Chemo 4: unbelievable fatigue in my thighs, specifically quads. I had energy, but my quads were screaming tired. I live up 3 flights of stairs and walk alot in the hills, and it was a very very difficult task to do either. The worst of it was the 2nd/3rd week after Chemo 4, which was my final chemo. At that point, there were a few days were a good power nap didn't make me feel refreshed, and my daily swim was exhausting but I kept talking myself through it, saying "You're done with chemo and you haven't missed a swim yet, don't stop now!" It's counterintuitive, but the exercise oxygenates your tired red blood cells and as my nurses promised, I always felt better at the end of my exercise/walk/movement.
Best,
Susan
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Be careful taking the Emend - my nurse said one SE for that is hair loss. I did not want to risk it myself...
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I'm a week out of 2nd Chemo and still have my hair. Not really any shedding either, just normal like it was before this crazy Cancer Train. I know I should be happy, but I just won't completely believe it until it's closer to the end. My doctor said he thinks it's working, so that should make me feel good.
I haven't lost hair anywhere else yet, so I'm kind of using that as a sign for when hair should really be gone. Is that normal? To lose hair on the rest of your body later than hair?
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Hi Michon....maybe you'll be one of the lucky ones that doesn't lose your hair at all. I think you're on TCH. I was on TCytoxan. I lost lots of hair "down there" after about a week or two but didn't lose other hair per se. It was more like I shaved my legs and pits and the hair either didn't grow back or grew back really slowly. I never lost the hair on my arms and didn't lose the hair on my eye lashes or brows until after chemo. I still say you are doing great if you have hair on your head after this long!!! Continued good success to you.
Update on me - after about 2 months post chemo I was finally satisfied that I was back to normal shedding. I'm going to color my hair at a professional organic salon on Sunday. I really can't live with this gray hair anymore. It's more than 2 inches of roots. Wish me luck!
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I didn't lose all my body hair right away. I really didn't notice when I did except the "down there" area. I lost about 75% of that in one shower between my second and third chemo. One day towards the end of my chemo I just happened to notice that I had no arm hair. Then I started really looking and noticed I had almost no hair anywhere. My body hair is super light so I guess I really just didn't notice. My legs and underarms were like Ditah. I just shaved and it didn't grow back.
I lost my eyebrows and lashes but not until after I finished chemo. I also lost some hair on my hairline and near my ears. I really knew I was sheading but it wasn't very evident until it started comiing back.
I did taxotere, carboplatin and herceptin. It has been six months sinceI finished and all body hair is back. I would have been fine if it never did except for the eyebrows andlashes. They are still thinner. I am hoping that changes when I finish herceptin.
Good luck to everyone using the caps. The saved my hair and helped to keep me sane.
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I second shadow2356~
I do not think I could have kept it together mentally if not for the Penguin Cold Caps.
Drim~
Best of luck with your hair salon this weekend. Mine did "take" the color a lot quicker after chemo than it did pre-chemo...
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Hi,
My lumpectomy was on Tuesday. By doing chemo first, the tumor shrunk enough to do breast conserving surgery and the BS was great. Other than the incision scar, you can't tell anything was done. I am very amazed that with the PCC I kept my hair and with neo-adjuvant chemo I kept my breast.
Crossing fingers and toes for clear margins!
Colleen
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Colleen! That's great news!!! Here's to clean margins!!
Have a good weekend!
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That's great Colleen! Hope you have a quick and painless recovery
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Hi all,
Just read a copy of "Cure Magazine, Fall issue" and it has an article concerning 2 ladies diagnosed with BC. It quotes the one as saying she cried when told her hair would fall out. These articles make me want to write and sing the praises of the Cold Cap. It would be nice to hear the version where she smiled when told her hair would not fall out...
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Yeah Colleen!
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Drim: Good luck with your hair coloring! I'm already dreaming of hair post chemo, but that's way too long off...
Still only shedding slightly and I'm almost a week out of chemo #2. Let's hope it stays this way!
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I did it!!!! Got my hair colored today!! I am really happy with the results. As I said, I went to a place that uses organic products but it's still a permanent dye. The color took pretty well but I can still see some rogue grays in there - 10,000 times better than before thought. I did the whole 9 yards - color, cut, blow dry and flat iron. Tuesday will be 12 weeks PFC. I think my hair looks a little thinner than before but not noticably at all. The condition of my hair isn't bad either. Guess I'll know for sure when it's time for me to wash and style it myself.
Michon - you're doing great!!!
Hope the rest of you guys are doing well too!!!
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I'm curious if you all had dandruff and scalp itching from not washing your hair? It's driving me crazy! My scalp itches and then I walk around with flakes coming out of my part. Gross. It's still better than no hair, but any thoughts on how to treat it if any?
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I'm pretty sure I had flakiness too. Are you careful to wipe the frost of the cap before each use? I feel like at one point my scalp got a little frostbite and then started to peel in the front part. I think it's normal for your scalp to be dryer during chemo and certainly after putting those frozen caps on your head. I don't think I did anything about it - just brushed the flakes off.
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Hi michcon, I definitely had super-flakiness in the first-2nd chemo, then it calmed down. But I couldn't wait to wash my hair each week back then, simply to get rid of the flakes! I kept reminding myself that itching was better than the dreaded "pre-hairloss scalp pain". Other than that, I just tried to pick out any obvious flakes if I was going out somewhere. Be patient, it'll clear up based on my experience. (And wiping the frost off the cap before each use definitely helps! Thanks for reminding her, drim, and congratulations on getting some beautiful hair again!!)
Best,
Susan
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Just got the good news -- lumpectomy margins are good enough to be considered "clear." The margins next to the IDC is 3mm, but the margin next to the DCIS is only 1mm. The breast surgeon, pathologist and radiation oncologist all consider this good enough. I am having 5 weeks of whole breast radiation and then a 1 - 1.5 weeks of boosts.
Radiation simulation is next week and the real stuff starts the following week -- the end is in sight!
Colleen
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anyone use cold caps for weekly taxol? im so skeptical of them n donrt want to waste the money but at the same time im 30 already had BMX hv an eight month old baby dont think ican handle loosing my hair too please convince me!!!!
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Hi jpmercy - there are of course no guarantees but the caps have been known to have great results with weekly taxol. I know someone on here used the caps for weekly taxol but I believe only had 6 weeklys before she had to stop. I don't think she lost any hair. She had a very similar diagnosis to yours - similar age too. Hopefully she sees your post.
I know I am amazed that I have a full head of hair and it really helped me get through chemo.
Good luck with whatever you decide.
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Hi Jpmercy,
I passed my caps on to a lady doing weekly taxol (t x12). She's about half-way done and seems to have lost very little hair thus far (and reports very little side effects on top of that!).
I totally get your anxiety. I'm also 30 years old and getting married next June. In fact, the caps are the reason I've set a date because there was no way I was walking down the aisle without my hair! PM me if you have any questions or concerns.
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