Cold Caps Users Past and Present, to Save Hair

PatinMN

JCS - looking good! I did take l-glutamine during weekly taxol - 15 grams twice a day. I waited to take it until I started feeling tingling, after the 3rd or 4th treatment. Then took it on chemo day and 3 days after, so 4 days a week. I sure hope that there isn't a negative link between glutamine and HER2+! Also took 100mg of B6 every day.

zinny

Starsarestars - I have a bmx/recon in my near future, and really hope my hair holds out.

JCS28 - nice going - today is humpday for me too!! done 4 DD AC, now for 4 DD Taxol. I was told not to ice as my Taxol runs over 3 hours and they say that is too long to ice…

I have heard to paint my nails the darkest colour I can find, and to put liquid bandaid on my cuticles. Also biotin for the hair, with Zinc ( in my multivitamin.) Talked about glutamine with the doc today, but haven't got it yet.

This was my pic from cycle 1. Looks just the same. Have my parka on again today….

Warrior on...

starsarestars

Many thanks Jc254 and wildflower ❤️

Just hearing your stories made me feel better and not so alone in this fight. I'm going to cross my fingers that I'll be finished with shedding soon, and can concentrate on my body healing after this surgery.

Nolagirl1126

JCS28 and Zinny - congrats on hump day! Looking good (I 💗 The camel pic!)

Today was my first Taxol/Herceptin...1/12 done!

Went well today. It kind of felt like a bad buzz from the pre-meds...I couldn't open my eyes to go to the bathroom...my Mom had to lead me (like a walking zombie!)

The cold capping went OK..My husband would stink as a nurse. No bedside manner. He was fitting them on my head like he fits the football helmets on the boys at the ballpark. He was wrangling my head to get the cap on, back and forth, and I got so nauseous, like morning sickness. I think I yelled at him b/c the nurses turned back to look like there was gonna be a brawl. Nothing to see here! So after a slight reprimanding, he was better on the other cap changes. 😳

Now home, ate, and finally in bed resting. No side effects to speak of. Just exhausted.

zinny

Nolagirl - I laughed out loud. My husband is wonderful, but the same when handling my head. He is so stressed, though, I won't freak at him because it will only get worse! I did squawk when he thunked the new cap down on my head, though.

Exhausted, too. The cold is exhausting more than anything else.

We had a major screw up this morning and forgot to put the caps on dry ice early enough!! The worst part is that I was awake, but I think in some kind of denial because I also didn't get my meds ready and all of the other stuff I usually do leading up to chemo. Then when we arrived, the caps weren't cold enough. My nurse was awesome and just delayed my chemo til I had had a cold enough cap on for the full 50 minutes. So kind and accommodating

Anyone else doing dense dose Taxotere? That is next for me - mine will run over 3 hours, and I am nervous about capping for even longer. That will be an hour before, the 3 hours of infusion, and 4.5 hours after. I guess it is only one more hour, compared to today, because we started at 9:30 with suboptimal caps and finished at 4:30.

Going to sleep.

Wildflower2015

JCS28,

Lol! The hump day cold capping camel should be the official mascot of this group! We can all definitely relate!

Nolagirl1126

Zinny - yes, I can totally relate to husband plopping cap on your head. I kindly explained to mine that when my scalp is already frozen, he can't just

Nolagirl1126

whoops! Accidently submitted....

He can just plop the cap down b/c it feels like a ton of bricks!

I am hopeful that next week will be better.

I'm nervous that the front of my head wasn't covered enough for this first time...Praying that I can cover it completely next time to avoid issue

dianasav8

I too did the cold caps and prepping for surgery next week. I shed some of my hair thru chemo! I work for a dermatologist and he told me that even tho I am out of chemo and caps saved most of my hair I may shed again cuz of surgery! It's called Telogen effluvium its hairs loss that happens for someone that has had any major stess in there life! I don't know if that why's it could be but just something he mentioned to me to be prepared for!! The hair goes into a dormant phase and falls out. Not really sure the cause but to me it sounds like it can be related!!

Good luck and stay strong!

starsarestars

Hi Dianasav8,

Best of luck with your surgery! Hopefully after surgery shedding won't happen to you!!!

JCS28

dianasav8 -- I did have some shedding after my double mastectomy but it wasn't too bad. I just noticed a lot more hair coming out when brushing or washing, but I couldn't notice any difference in thickness. Good luck!

Another question -- has anyone notice new gray hair! I'm traumatized! I just turned 40, and I just found my first gray hairs last night. I want to believe it's from the chemo and will go away. My cold capping has been fabulous. I've had 3 of 6 rounds and I still have nearly all my hair. I have a lot of shedding, but I can't tell that I've lost any volume. Has anyone else notice new gray hair? Is it just new growth? Is it possible it will go away? I have red hair, and I've also noticed some new red hair coming in that's even redder than before. Weird stuff. No one else can tell. But I'm just curious.

Nolagirl1126

JCS28- I definitely have new gray hair. I think it's from all of this cancer stress!..Can't wait until I can color again!

33triple

Nolagirl112 you have cracking up over here!!!! Getting ready for #2 TCHP tomorrow and I've shed quite a bit but I had a head full of thick hair to start and I'm hoping the shedding won't be noticeable to most. I too had issues getting my caps cold enough because the freezer want set correctly. I checked on it when I dropped off my caps and it seems to be ok now. I also realized that putting caps back into the freezer to complete the really long first day may have lowered the temps of the other caps. I have 14 caps but tomorrow's treatment will require 18! eeek! Hoping it works better this time around... Fingers crossed!

Nolagirl1126

Sending good vibes to you for treatment today 33Triple! Hope the caps are cold enough today. Today was my "wash" day, and I definitely lost more hair than normal after wash and combing. 😕 And that was after 1 Taxol treatment! But not shedding yet...so I am hopeful.

JCS28

33triple -- Yes, definitely putting the used caps back in the freezer can affect the temperature of the ones still in there. We leave all the used ones out and then put them back in at the end of the day for next time. But I am fortunate in that I seem to be the only one using the freezer right now. I have 14 caps but have used 12 each time so far.

MB12

Can anybody tell me about throwing an ammonia free quick color on your roots at the end of chemo. Just in a few spots. I know I read somewhere on here that a lady's husband is her stylist and colored her hair during chemo. I'm a medium blonde and have dark roots.

Plus, I've noticed more grey in a few spots, not that it's a lot, but I definitely know it was cancer related stress. Hardly had any before.

Thx!!

angiesgo

I have been using an ammonia and peroxide free root touch up marker during cold cap treatment as my roots have been really bad. It has not affected my hair loss or the effectiveness of scalp cooling. I'm on weekly taxol and have number 10 session next week of a total of 12. I've shed hair but nobody would know, I've retained most of my hai which I'm very gratefu

MB12

Angiesgo - Tysm! Great to hear and I'll check into that. I will need one touch up probably by April and that will be holding off a tad to not overdo it

33triple

Ok ladies, round 2 went better as we were able to get the caps cooler by keeping the used ones re-cooling in a separate freezer. I had a ton of shedding yesterday (1st day after round 2). About half of what I shed the entire 3 weeks after round 1. Eeek! I wonder if it was from the actual cold capping... It's not always easy getting those things on tight. I wonder if the pressure and cap wrestling stressed my head. Any one else experience this? 

Iced my fingers too this time! 

Wildflower2015

Hey, 33triple, it sounds like you're just experiencing the normal first heavy shed after starting capping. From what I've seen here, many, if not the majority, of people who cap get a heavy shed somewhere between the first and second chemo sessions. Some lucky ones never shed significantly, but many of us did, including me. My biggest shed happened about 24 days after my first chemo, and then shed only a little during the following treatments. It sounds like you're right on schedule for the dreaded first shed. I really don't see how the cap wrangling could have stressed your hair out - hang in there! You have hair more than 21 days out - you'll be OK!

33triple

Wildflower2015, thank you so much for the reassurance! I was wondering what was going on! Glad to hear it's normal

❤️❤️❤️

Wildflower2015

It's normal...although not fun to deal with! You will be very glad you chose to cap when you're all done!

Suzted7

Ok....someone "talk me from the ledge", ( Not literally of course) I am scheduled for my second round tomorrow (TCx4) and I started shedding two days ago and I feel like I've lost like 50% of my hair!!!! I have long (past bra strap) thick hair and it just kept going and going. I had to wash my hair and there's MORE! I'm freaking out a little now! It's getting so thin. Is THAT normal?? I don't have big clumps coming out that leave a bald patch but it's A LOT! Help calm me down or tell me....it's a no go and might as well accept defeat.😱

EstelaLorca

Suzted7 don't give up!!! I was on that same ledge after round 2 and I decided to continue for round 3. The shedding has slowed down a lot for me after round 2 (the weekend before my scheduled round 3). Showering and washing my hair is the hardest. I've started washing my hair 1/week. My motto is, as long as I can fake it - keep capping!

I bought some "hair fibres" to make my hair look fuller. I also take Biosil and Biotin supplements.

Don't give up yet!!!

Good luck

Aussie-girl75

Suzted7 I was on that ledge many times also. Always worried that by the end of chemo I would've shedded all my hair off.......but I didn't and while it was quite thin I didn't have any bald patches or require a wig. Keep going and try to stay calm and be confident that the process will work for you. You can do this. Xx

Wildflower2015

Hey Suzted7,

From what I've read, it's pretty common to shed heavily between the first and second chemo. (If you read the posts backward, about four posts prior, you'll see my reply to someone else who was also stressing about the first shed.) I shed heavily around days 21-28 and then it let up. I had the same regimen as you and got through it ok - and my hair is naturally thin and fine to begin with. Although my hair thinned overall, it never came out in clumps, and I never needed a wig, or even the Toppix hair fibers. Keep on capping - you'll be fine!

zinny

Shed city…Thank goodness I started with thick hair. It is so stressful to see those hairs come out. I am losing at least 30/day, I am sure. I just hope that 1) IT doesn't get worse when I start Taxol 2) The rest doesn't come out when I have my mastectomy!

Capping away anyhow…

Is anyone doing DD Taxol - the 3 hour infusion? And if you are, are you icing your hands/feet?

I just picked up silica and L glutamine ( probably a bit late with the silica!) preparing for the next step...

JCS28

Yes! Shedding is normal! I've only had 3 rounds so far, but the shedding just after the second round was the most. And it still seems like a lot sometimes when I wash. I think b/c we're not washing as often, then there is more to come out b/c we are handling it more. I had more than I'd like to come out last night when I did a wash after three days. But it's still worth it to me!

Leslienva

Suzted7, if you do end up getting a thinning or bald spot, you can use Toppik, which works great. You're bound to lose hair, just not enough to require a wig. Hang in there!

Suzted7

Ladies...I think I may have to throw in the towel. I am losing a lot from the crown of my head and the sides. I still have length but it is so thin. I had to cry because I just had these high hopes but apparently it's not going to work for me. I can't see spending another $600 when it's pretty much a done deal. My scariest thought is permanent hair loss and second...ugly hair coming in that I'm stuck with...like the dreaded chemo curl. I hate this.