Cold Caps Users Past and Present, to Save Hair

schoolmom

The nurses were great at my first tx. today.  My helpers were awsome.  I had 2 helpers for the first 5 caps and 1 helper for 6-15.  Didnt have any hair snags. Some pinking on forehead but I put some repairing lotion on after caps came off also along side. Need more dryice nexttime.  The last few caps were only at -20 to -29 so we changed after 25 minutes instead of 30.  Hope it goes well.  Go for my neulastas shot in the morning and continue with 2 steroid pills for 3 days.

Feeling little nauseas and headachy...going to lie down.  Check in tomorrow.

sebm9

Congratulations schoolmom! You are now a pro! Make sure to hydrate like crazy. 

Mamacath

School mom-have you heard about taking Claritin (over the counter) to fight the bone pain from neulasta shot? I didn't know about it until after my first chemo...it made a huge difference for me. Hope round one is OK for you.

schoolmom

I have taken claritan 24 hours now, Sat, Sun, Mon and today Tues.

dancetrancer

Yay schoolmom!  Wishing you minimal SE's!!!

schoolmom

My forehead between moleskin and hairline was a little pink last night.  I put a repair lotion by vasoline..repairing moisturizer.  This morning my face is kinds blotchy....is that normal...not sure if it is from the repair lotion or allergic delayed reaction.  Go to get my neulast shot in an hour.

PatinMN

School mom, I don't know about the blotches, but I have a suggestion for the area between your moleskin and hairline. Cut up a pantiliner and stick pieces onto your moleskin, extending up over that area. That protects the area from the extreme cold without having to stick anything on those baby hairs. My local PCC rep's suggestion.



One time I think my cap got put on a little askew and a small area on the side of my face got too cold. That area got red and eventually peeled. Just a bit of "frost nip" I think. Hopefully your red area is no worse than that.



congratulations on getting through your first treatment! I think as long as your too-warm caps were at the end of your day, you should be fine. Hope the nausea is gone today.

Hortense

For those PFC and wondering when their shedding will stop, I can report that my shedding, which sped up 3 weeks after my last chemo (on July 10th) before settling down at a steady pace of loss, slowed quite a bit after 12 weeks, then seems to have come to a halt by 16 weeks. I have given it another week to be sure and been watching carefully, but I haven't seen trailing hairs all day long or much loss during the last two shampoos. I am pretty certain my shedding has stopped. It's a good feeling.

Good luck Schoolmom! I wish you the best and hope you get through chemo as easily as possible. Drink lots of water and take stool softeners like Dulcolax to help avoid the discomfort of constipation which is wreched. I found also taking a Sennacot the day before, day of and a few days after each chemo was helpful. Rest as much as you can. You will soon lose your sense of taste, but do your best to snack on healthy foods all day long. Rinse with baking soda a lot also to try to ward off thrush. 

reneerDSM

Hortense,

When was your last Chemo?  I was 15 weeks on the 2nd and still shedding about 70-100 per day - soooo good to know it might be over soon.

dancetrancer

Hortense - congrats on stopping shedding!  Mine slowed significantly by 4 months as well.  It seemed like it took forever to get to that point.  I am now 5 months PFC, and I think the shedding I am having is my normal pre-chemo amount.  Such a relief!!!  

Tlym

Schoolmom-I had chemo #1 on Friday. Did you cut the moleskin to follow the shape of your hairline? I also put a thin strip of gauze between the moleskin and my hairline and it worked great in protecting my skin.  Hoping you do well with the SEs. I'm just starting to feel on the upswing today.

schoolmom

Thanks ladies.  The pink on top of my forehead is cleared up but going to use gauze next time.  How often do you wear the cold caps during the weeks between chemo...?

youngmomtofour

Hi Ladies. well, here I am, post kicking and screaming. well, not so much anymore. Ordering the cold caps tomorrow am. First herceptin/carboplatin/taxotere to start nov 15. Was hoping for a little guidance on WHICH igloo 60 qt cooler with wheels. And, the dry ice co said they will cut them to whatever size I need. was hoping to do the 10-10 lb sections without needing to break them apart to fit nicely in the cooler. Wishing there was a you tube video on the topic...

michellej1980

I've just had a thought. If I can't get the cap to make full contact with my head maybe I will get some freeze packs and shove it up inside the back of the cap where it gapes! You know those things used to apply to sprains and other injuries? What do you reckon?!

schoolmom

I used a combination of 6 blocks of dry ice and 20 pounds of pellets.  I need to get more dry ice for next time because the last refrozen caps were not -33 C,  they were more like -20C but the drugs were already finished and we were home doing the last 4 hours.  If you are going to use those blue gel packs, put them in ziploc, not directly on the dry ice.

makingway

Michelle-Bad idea...Better to use extra straps to make the cap fit closer to your head.

Tlym

Schoolmom-I'm going to do my first in-between icing tomorrow and shooting for twice a week thereafter. I washed my hair for the first time in 6 days today. I was very careful not to pull on it and used cool water to rinse. It really wasn't so bad! My long hair has, however, taken two hours to dry and we've got 77 degeree weather here!

Youngmom-Feel free to join us on the November chemo thread as well. There are a couple of us cold caps users there.

michellej1980

makingway - why do you say that? The Paxman caps are quite firm so if they don't fit snug, it doesn't seem possible to make it so. As you apply pressure to one area, it lifts off another. Well, I will play with it as no doubt I'll be waiting ages for my chemo drugs to be made up...

michellej1980

I've just thought of the perfect 'strap' - a canvas belt: http://www.ebay.co.uk/itm/Canvas-NAVY-MILITARY-Web-Style-Belt-GUN-METAL-Buckle-37-x-1-1-4-/360503553002?pt=US_CSA_MWA_Belts&hash=item53efafabea

Laura5133388

Youngmom, I contacted www.rapunzelproject.org and they donated a biomed freezer to my center. It makes things much easier, but sometimes chemo centers are reluctant to accept them. If you decide to pursue this, contact rapunzel ASAP.

makingway

michelle-It is a bad idea to stuff a gel pack underneath the cap-it will not maintain a consistent temperature and would also create an air pocket. The strap you're considering is nothing like the straps used for cold caps. It is not flexible and has no way to attach to a cap. Perhaps you can contact the Penguin company. I know they don't sell their caps but maybe you could buy a few straps...wouldn't hurt to ask.

Anniemomofthree

Just popping in!  I am two years out form diagnosis.  Used Cold Caps.  I am 18 months out from chemo - TCH.  My hair is so thick and still curly!  I have to straighten it...to get it to look like my pre-cancer hair.  All is great.  Thanks to Frank and team!!!

schoolmom

I have long, thick hair and Geralyn and Frank sent the 8 caps, 2 black straps, 1 gold strap and 4 headbands that you rotate out.  Annie thanks for the encouragement as we begin this.

mdg

Good luck Schoolmom!  We are behind you on this!  Hugs!!!!

dancetrancer

solt - my new growth actually started while on chemo.  I didn't realize it until afterwards, though - when I saw long strands (a couple inches) that were curly growing behind my ears (I have straight hair).  I lost more hair in that region, as many people do.  I can't tell where it is growing in on the rest of my head, but it must be.  

PCC does say keep the cold caps in the freezer between treatments b/c it may affect the gel...we bought a deep freeze b/c we couldn't stand not having freezer access...oh well, at least we are still using it! 

schoolmom

QUESTION........so I can put my PCC back in the box and out of the fridge until 3 days before tx2????   I did not know that either.  Was wondering how I was going to survive for 3 months with no freezer.  I am using them out of the fridge for 30 min a day so could keep two in but better then 8. 

Is that what you all do between treatments? 

Thanks for the info soltantio.

michellej1980

Quick but urgent question: am about to have chemo now - just waiting for scalp cooling machine to get cold. Nurse is saying I don't need caps for cyclophosphamide, just Taxotere but everything I've read and been told says differently. I don't want to argue with her but at the end of the day it's my hair! She also says I only need to wear it for an hour after but the instructions say 1-2. I'd rather go for 2! They probably want to go home on time but tough. I've been here since 12 and now it's 4pm and not even started yet. I can envisage tears later on...

schoolmom

Go with the directions from Geralyn and Frank.  Stick to your guns!

schoolmom

Just washed my hair first time post tx.  I am using argan oil ph and sulphate free shampoo and argan oil conditioner.  I used cool water and washed in the sink.  Basically scrunched the shampoo into my hair and dipped into the water with a glass and rinsed.  Then scrunched the conditioning oil into hair, not the scalp cuz I read to not get it in the scalp.  Letting it sit for 30 minutes and then going to rinse it out.   

OOOOPS....timer went off.  Gotta go rinse.  Check in later.

dancetrancer

michelle - definitely stick to your guns.  You definitely can have hair loss with cyclophosphamide:

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Cyclophosphamide.aspx

(scroll down -hair loss starts 2 to 4 weeks post tx)

And you definitely want to cool as long as possible afterwards - PCC advises 4 hours after last infusion is complete.