Life After Cold Caps: a place for ex-cold-cappers to share

pch

And yes Warrior Woman! Who was there for us in the way only a veteran CCer can be? Show us your shiny hair!

(For anyone newish, Warrior Woman was like the second coming. She got many a one of us through this hell ride.)

Warrior_Woman

I needed a break from being here and I think it did me well. I'm refocused on living my life and less absorbed with my fears of cancer. I joined a support group that is wonderful for me.

Kim - Good to see you. Isn't it great to be back to normal. Even though capping saves hair, it is so damaged and does take time to get back to normal. I switched to the AIs because I have 2 mutations of NF1 gene and it prevents me from benefiting from Tamoxifen. Tamoxifen pushed me to post menopause and that allowed me to finally switch.

pch - Ah the good old days! I'll post an updated pic shortly. I have my before and after on my profile. My eyebrows never grew in as full as they were. Oh well. That's what brow pencils are for.

pch

I'm glad you're out there WW. I have been derailed by a thing or two that kept me hanging around. And happy for the company I might add. This is the mother of all foxholes. Soon enough I'll pass the mantle on like you did. In the meantime, I'm happy you're finding your way the way it works best for you. Braveheart.

Wildflower2015

pch and Warrior Woman.....noooo! please stay active around here a while longer! us cold capping newbies need all the support and encouragement we can get!

Warrior_Woman

I'm not leaving. I've just established a balance. I was in survival mode for 2 year. I spent all my time scouring the internet in my crazed attempt to cure cancer. As insane as I felt there was functionality to the madness. I found research my MO was not familiar with that changed the course of my treatment.

pch

You are one crafty relentless genius, WW. Good shooting.

Leslienva

Wildflower, I got osteoporosis while on Tamoxifen and Zoladex injections when I was first diagnosed in 2000. For my second diagnosis in 2014, I'm now on Aromasin, which is supposed to be easier on the joints than the other AIs. I haven't experienced any hair loss, but I do get the joint pain, especially in my knees.

goldenpawsKim

WW, yes, good to feel normal again ... except for all these crazy hairs that are sticking out all over Could be worse though. Have a wonderful holiday and again, thanks for keeping me calm. Take care and stay in touch - Kim

Leslie - I'm having terrible joint pain on Tamoxifen. Doc says its normal but ouch! I guess its better than getting cancer ugh.

Angiel

Kim, I don't know how long you've been on Tamoxifen but I started it in July and had horrible joint pain as well. Now, after 5 months it has really gotten better. Hopefully it will for you too!

goldenpawsKim

Hey Angie: I've been on tamoxifen for just about 6 months. Its brutal. In the morning, I feel like an old lady. It does get better throughout the day but didn’t know about this SE. Ugh. My oncologist wants me to start chondroitin supplements. I guess I'll give it a try. So glad to hear your pain has gotten better Happy Holidays to you & your family. ♡ Kim

Leslienva

For those of you with joint pain, try the MegaRed Joint Care gel caps. They've really helped me!

goldenpawsKim

Thanks, Leslie, I'll give them a try! Hope you had a wonderful holiday Kim

Leslienva

Goldenpaws, they're a lot smaller than the other supplements I've seen so they're easier to swallow. It takes a few weeks for them to kick in, but I did notice a difference. Good luck!

willa216

Hi: I know this is a really old thread but am wondering if anyone is available who might recall what exact brand of color you may have used for first color PFC. I'm 12 weeks. I know we are supposed to use something without ammonia or peroxide. My colorist isn't being all the helpful, mostly I think because she's worried about selecting the wrong product. She says she has semi-permanent color but that it does contain some peroxide. I have dark hair and am just trying to cover the gray.

Thank you! And thank you for all the inspiration.

Sending love.

Wildflower2015

Hi Willa, my stylist colored and highlighted my hair at around 14 weeks PFC with the same product I used before my diagnosis. It's a brand from Italy called Davines. It does contain peroxide but I had no problems. I have baby fine hair and it came out just fine. No weird shade, no breakage, just the nice blonde shade that I had before. I say go for it. Coloring my hair did so much to help me get back to feeling normal!

willa216

Hi Wildflower - thank you for your comments. I also saw your note on the cc'ing thread. So helpful.

Hope life is treating you well! Take care.

301724

301724 Joined: Jul 2012 Posts: 469

Post a reply

A few seconds ago 301724 wrote:

Hi all-

I'm a voice from the past. Checking in to get some info from you. My institution is looking to 'institutionalize' the offering of cold caps. Yay! That's great news! What I'm looking for is info about whether or not your institution - or any you know of - uses volunteers to be cap buddies for folks who either don't have a friend/spouse/partner to help or who would appreciate having a cap helper with 'more experience.' Any info welcome. And thanks!

angiepie

I finished my 4th and final TC oh Dec 19th. I used Chemo Cold Caps and lost essentially zero hair....until last week! I am shedding like crazy! It started a week ago and I've had several days this week that I am shocked I have hair left as it seems like its everywhere. Looking at me you can't tell but i can see some spots thinning when I look close. It is freaking me out! and my head keeps tingling in spots which makes me think those spots are thinning next? Suddenly my hair is frizzy and rat's nest like so soon after my daily comb.

Wooki

Hi Angie

Your dx is almost exactly the same as mine - TNBC, grade 3, etc and I have had similar treatment - TC but docetaxel with cyclops not - as I call it - not carboplatin. I had my last TC yesterday. Hurray! I started shedding about 18 days after first cycle - some days worse than others and if I didn’t wash hair carefully it matted and shedding was worse! However it suddenly stopped shedding about a week before third cycle. Waiting to see what happens next and I will continue to treat hair very gently for next 5 - 6 weeks. I shall continue to not washing hair more than every 5 days , like warm water ,and no products or hair drying! Luckily I’m not at work - on sick leave and gearing up for Rads so wear turban on bad hair days. Hope your shedding stops soon.

Best wishes

angiepie

When did you all start using 1) hairdryer, 2) mousse or gel, 3) hairspray??