Cold Caps Users Past and Present, to Save Hair
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The protocals say 6 months after finishing chemo to use permanent hair color. There is a colormark coloring stick, wide tip, that works around temples and hairline. It is temporary and will wash out. Also Beautiful collection of temporary semi perm hair color. It also washes out but it seemed to last 3-4 washings until I needed a touch up. Stay away from permanent hair colors for a while. Hair is still delicate. In fact, I continued to shed for about 6 weeks so you need to be careful still. Congrats on her doing so well!!!
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Hi everone- I had been away for a few days so sorry to miss posts, but it sounds like you are doing great.
Chelsea my blonde hair started growing in brown during the caps and I used the colormark which was great temporarily, and then two months PFC I used the Clairol beautiful collection - temporary haircolor, available at Sally Beauty.
Five months PFC I got brave and used a regular haircolor- feria, which was a month earlier than recommended but nothing bad happened. Now my roots seem to be growing in thier regular blonde color again, yay!!!
Weird what chemo does to us. I got the color change but not the "chemo curl",
I am just glad to actually HAVE hair.
Hang in there ladies- the months go by quickly.
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Thanks everyone!! Incredibly tired, but my husband is taking my four year old out for the day so I'll get a chance to rest.
Sent my caps back and did that ever feel good!!
I meet with my radiologist in 2 weeks, but honestly can't even worry about that now.
Have a great weekend everyone!
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Congratulations Tmb!!!
Rads are not nearly as bad as I had feared, and you are right- one hurdle at a time.
Happy resting!0 -
OH, the joyful day of sending the caps back - congratulations!!!!
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I just finished my third round of chemo on Monday. I started on June 17th and still have my hair and doing great. I got my cold caps through chemocaps.com. It has been an amazing experience and I highly recommend them!
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I start 50 minutes before and continue for four hours after.
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Hi Hope,
I'm back to work so my posts are sparce, my hair hung on and I've colored it twice with clairol beautiful until next month and then it's back to full coloring. The shedding has almost stopped and I feel great. I finished rads and started Tamoxifen and have a new appreciation for living a stress free life. I saw the last picture you posted and you look great. Looks like we made it by keeping our hair and so will most of these beautiful women.
Take care,
Rhonda0 -
Hi tmb173, are you using penquin cold caps? If so, what chemo meds are you on and are you having success with the caps. I'm considering the caps however, my MO claims they do not work and are too much trouble.
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Hi Candi,
Sadly you are not likely to get much support from your doctors. I think they fear that the caps will get in their way somehow. They dont- none of us would ever ask the infusion nurses for help- we take our own friends to do the capping.
If this is something you want to do, and I highly recommend it- remember you can change doctors or centers. They make a lot of money from treating us. You can take your business elsewhere if they object.
We have all had to be our own advocates here, very few had doctors who thought it would be a good idea. And yet many of the docs- including mine- were amazed when we come in after chemo with hair.
Be strong!! You are in control.0 -
Candi -what chemo will you have? I had TCx4 and I kept my hair. Most of us with TC had great success. I have pictures on my blog -link below.
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Hi Curly,
Doing OK. Had #2 Thursday and was a slug all weekend. Hoping to join the living today.
Discovered a big rat's nest in my hair as I hadn't combed it all weekend - so paranoid about combing/washing it unless I'm seeing people. So now how do you suggest getting this giant tangle out without pulling the hair out? YIKES!
Thanks all - and happy to read some good reports from all of you!
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PortlandLady - I highly suggest spraying a detangler in it and then combing carefully from the bottom up, while holding the hair tight above so it doesn't pull out at the root. I used K-Pak Liquid reconstructor every time before combing out - detangled my hair beautifully and also strengthened it - love this product:
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Thanks, Dancer! I remember using that product years ago - they do make some good ones. Not sure how I look presentable until I get to the store but I'll try the detangler I have on hand this time and pray..
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Candi,
Hi! I had 4 rounds of TC. The Penguin caps worked great for me so far. I am 5 days PFC so another week should tell the tale. My MO was noncomittal/supportive. She wasn't sure they would work based on what she had heard but said she would keep an open mind- if I kept my hair she said she might become a convert.
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Hi SusieQ I will do that. if you want to email me your pics send me a private message and I´ll give you my email address. Are you still doing rads? I guess you didnt' need a mastectomy!
MY good news is oncologist says tumor has melted so i'm stopping chemo at 12 weeks instead of 18 and last one is in 2 days. then MRI to confirm findings and meeting with Dr esserman to discuss surgery. I have no idea what to expect yet. I'd sure like to bypass mastectomy and radiation but what ever kills the beast , will do it. Dr Esserman seems to have the opinion that lumpectomy and rads are the way to go unless the tumor is huge is guess, Mine wasn't small I SPEAK DEATH TO CANCER! YUK I can't wait to return the cold caps if MRI is good. My scalp is always sore at the crown though i've had minimal shedding so far. When is it ok to color you hair again?
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Hi Leslie,
First, GREAT news on the melted tumor- yeah!!
I am indeed still in radiation. Today is my last day of whole breast and then I do 5 days of the "boost". It's been a breeze so far - it's just a bit of a pain to go there daily but I can't complain.
I started Clairol Beautiful at 4 weeks after my last treatment (ammonia and peroxide free) It can be found at Sally Beauty but it does wash out after 8-10 washes. I'm still using it. I'm at 8 weeks PFC and my brows have filled back in as well as scalp (over my ears where I went bald) and bikini area. I've really noticed my hair in those areas making a full comeback at the 8 week mark. I'm still very lightly shedding, but once that stops completely I'll move to Naturtint hair color which can be found at Whole Foods.
I'll email you the pics - congrats again on shortening your chemo!
tmb, congrats on finishing!!! Isnt' it GREAT to send those caps back!?
Susie
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YE its going to be GREAT sending them back! and you look amazing! I think having my hair has made my family and friends have less comassion for me. they tell taht i don't look sick so they expect me to feel good
Thanks so much for sharing that. HUGS!0 -
In 2 weeks I am going to start slowly working back to my old products. I have also used hot on the blow dryer in 30 second increments the last couple of times I washed (it was late and I didn't want to go to bed with a wet head). I am going to see my hairdresser in early Nov and I may relax if I have no setbacks. Slow and steady. I have grey, but it is not too bad and I would rather work towards a relaxer. Will post pictures soon!
I also am waiting for my official itemized invoice from Penguin- which should come as soon as the accounts department receives word the caps are back. I hae made pretty good progress with my insurance company and have been told that is the last item theny need to process my claim. I hope to get my claim reimubursed (at least partially), and I will share all details if I get any compensation- both here and on the penguin site. That is information I definately want to try to deceminate. I have Horzion Blue Cross BTW. If I can contribute that I will be very pleased.
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Hey Everyone,
Its been a while since I've checked in b/c I was out of town for the last 6+ weeks. Kind of crazy, as I left 5 weeks after chemo finished. I was really tired, but it felt good to go see friends and family across the country. Anyway, not sure if I did it right, but I just changed my avatar pic to one that I took about a month ago, which was about 2 months post chemo. The sides of my hair are pulled back but you can see how well the PCC worked. (My hair is much shorter then before treatment started as I cut some during chemo (as I was allowed), and then I cut some right before I went away.) I have been SO pleased with the PCC and how much hair I was able to save. It thinned, but that's it. As someone who was bald 18 years ago when I went through chemo the first time around, I can honestly say that PCC made going through treatment so much easier, b/c i never looked like a cancer patient.
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So glad so many of you are finishing up and shipping caps back! Hair growth is even better! Congrats!!!
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I am 5 weeks PFC and still shedding steadily. I am so worried it will never stop. It's also dry and scraggly looking I'm almost embarrassed to go out in public. Help - when will it stop? I need to do something to shape it up, moisturize and color but scared to death I'll lose the rest. I even tried on my wig as a back up plan but sure didn't like the look of that...it looked fake.
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Amrdbit, thanks for sharing the photo. I wish we could see more photos of everyone. You said you cut your hair during chemo? I thought we couldn't cut until after chemo. I'm only 3.5 weeks into chemo and my bangs are too long and annoying.
LeslieVilla, I do suspect that many people don't believe you are sick until they can see it. I got a lot more attention during my first chemo even though I felt a lot better than I do this time, but I do not miss the pity looks at all.
I loose hair daily and I wonder if it will continue like this the whole time. I don't really stress about it because I have a feeling its going to be OK and if it does thin significantly I can handle it. I stress more that i won't regain my energy before I run out of disability, but ill deal with that too. I just want to get back to my life.0 -
AmyQ I was a bit of a crazy woman and got a cut 2 weeks PFC to get those dry scraggly ends off. I have no regrets! I'm still lightly shedding 8 weeks PFC but it has slowed a lot, especially once I noticed real regrowth in all areas of my body where I had thinned. This all seemed to occur around 8 weeks PFC. I knew I'd shed post chemo but it still is scary. (and annoying). I think its wrapping up for me now but I'll report back when it has fully stopped.
Marsha, again I wasn't being good at following rules. I cut my own bangs 3 times during chemo because they drove me nuts. I also started washing them every other day by using a shower cap to protect the rest of my hair. I'm probably not setting a good example - things worked for me despite the "cheats" but I know we each respond differently.0 -
Congratulations to those recently finished. To those considering using the caps- it's worth it.
I'm almost 7 weeks PFC and still shedding steadily. I'm not as brave as some of you and haven't cut or tried any kind of color yet. It's been six months since my last cut and color and my hair looks it. I did start using L'Oreal Eversleek Leave in Creme to tame the frizz. It's sulphate free and works pretty well. Otherwise, still washing my hair using cool water in the kitchen sink and no blow dryer. I'm really hoping that by the end of August the shedding will taper off and I can be a little more adventurous with color. Until then, still using colormark and trying to be patient. I'm so glad I have hair to stress over!
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I just had my first treatment yesterday and so my first use of the cold caps. Prior to treatment, I couldn't find good information on what to expect as I used the caps. I thought i would record my experience here as a point of comparison for other users.
It was damn cold and disorienting at first. i felt really dizzy and nauseous for the first couple caps, in addition to the searing cold pain. My husband told me the second was worse than the first-- I looked pretty distraught. Remember those first caps were changed every 20 minutes, so there was alot of stimulation to my freezing brain.
But eventually I got used to it and into the rhythm. For each change of the caps, the pain from the cold-- which appeared to be localized to different spots on my head each time-- really did subside after a few minutes, until another new cap went on. But being able to anticiapte that the pain would end soon was helpful, and you had a good 25 minutes of relaxation. I think things changed when the pre-chemo drugs kicked in--- I was no longer dizzy and nauseous-- the benadryl, zofran, steroid really helped. I can't say how things would have gone without the drugs but I actually settled down and was in a semi-conscious, meditative state most of the time.
I had a down jacket and a down blanket around my legs, one heating pad in front under my shirt and one on my back. I was really comfortable. i had heard of another patient who just shivered through the whole treatment and had a bad night, so I wanted to prevent that. No side effects last night from the caps or the chemo.
I want to leave new users with the impression that it is not easy but you don't need to be heroic to pull it off. And get the drugs!
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Thanks for sharing your experience aef, and congrats on getting your first treatment and capping under your belt! I also found that taking a Xanax and 2 Tylenol about an hour before treatment made a big difference for me in 'settling in'. All the best to you, keep on posting so we'll know how you're doing!
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Thank you, AEF! I'll be starting with the caps at the end of the month and it's reassuring to have this kind of feedback.
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I took and advil and an ativan before I left home for chemo and the caps were OK. I used an electric blanket too and was not cold. You girls can do this!!!:)
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I want to add that everyone's experience is different. Other than the first 5 minutes of the first cap of the day, I had an easy time of it. A little brain freeze headache when the first one went on but after that no troubles whatsoever. I did bundle up with a fuzzy blanket I brought from home and I always wore layers but CC's were pretty painless for me. The most annoying part was changing them every 25 minutes. It seemed I couldn't really relax and doze as I was always in the middle of getting them changed. And even though I lost about 1/3 + of my hair, they were worth it. EAF, I hope they get easier for you.
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