Topic: Cold Cap Users Past and Present, to Save Hair

Jun 23, 2012 02:53 PM dancetrancer wrote:

cwsterling, family is thousands of miles away from us, too.  Just me and hubby.  I had volunteers (friends), but once DH and I did it the first time, we decided we wanted it to just be us.  He did such a good job, I didn't feel I could trust anyone else (paranoia!).  And he really enjoyed being able to do something concrete to help me.  So it's ok if it's just you and hubby.  

The other possibility - contact your local American Cancer Society and/or Race for the Cure branch - I bet for sure you could find some volunteers willing to come help!  

And as Laura said, yep, I'd be willing to help someone who lived near me. 

Jun 24, 2012 01:56 PM hbb wrote:

5 more days, I'm terrified!!!! Did any of you do the in between cold caps during the week? I'm do scared,I just want it to work.

Jun 24, 2012 03:07 PM hbb wrote:

Ali, what regimen were you on? Did you wear the caps before, during, and four hours after your treatment? 60% seems like a lot to lose.

Jun 24, 2012 04:23 PM hbb wrote:

thank you so much for the clarification. I used to the caps half an hour before all during and for 4 hours . they were cooled with dry ice to negative 32 degrees celsius. I am hoping for the best.

Jun 24, 2012 04:39 PM dancetrancer wrote:

Jun 25, 2012 12:21 AM Hortense wrote:

To those who ask about wearing cold caps inbetween treatments: I took two caps home after my first session with the idea that I would use them inbetween, however I simply could not make myself use them. They are cold, really cold, and I just could not physically face putting them on - couldn't bring myself to even touch them, or look at them, is what I mean. I was very happy to return them when I went in for my second treatment and haven't bothered to bring any home since. I just use the caps on chemo day (three treatments so far).

I should add that my feelings about using the caps at home may be different than other people's. That's because during my first cold cap session my well meaning helper used them at 38º C which was way too cold, and I think caused me to have considerable swelling across my forehead and the whole top of my head which resulted in a week of unnecessary head discomfort and two spots of frost bite. Both frostbite spots peeled and flaked eventually and are a bit bald, though I can cover them with the rest of my hair.

I thought 38º C was too cold when she mentioned the temperature the caps were at, but as she had helped other ladies with cold caps before I assumed she knew more than I did. Also, by the time she told me their temp, I was flying high from pre-meds. Had I been "sober" I probably would have questioned it instead of nodding OK and wondering quietly about it. Afterwards, I checked with Geralyn who confirmed that I should have been at 32ºC, so that is where the caps have been in the following two treatments and I have had no more discomfort, swelling or frostbite.

Moral: read your protocol beforehand (I did), inform your helpers about it so they know it (I didn't)- and BRING IT WITH YOU for everyone's reference (I should have). I stupidly forgot to bring mine in my rush to pack up and go, so I blame myself for what happened that first time as I could have prevented it easily.

On the good side, I still have a head of hair, even though it has thinned over all quite a bit through shedding. I'd rather have thinner hair than be bald. But, I'll be damned if I put a cold cap on between treatments.

Jun 25, 2012 10:09 AM dancetrancer wrote:

LOL Hortense, I so agree with your post.  Even though I am THRILLED to have my hair and THRILLED cold caps did that for me, no way was I gonna put myself through any other discomfort while already suffering miserable chemo side effects between treatments.  No way!  

On the subject of frostbite, this last treatment I did not put the moleskin close enough to my hair line in one small area near my temple.  The area did suffer frostbite (I couldn't feel it!) - so have your helper check your skin very closely between cap changes and make sure you get close enough to your hair line!  I kept it farther away b/c on prior sessions I had the worst time getting the moleskin off of my forehead without pulling out some scalp hair.  Yikes!  

I am now almost 2 weeks post and still have a small brown area on the area of skin that was frostbitten.  I do not know if it will ever become normal skin color again - looks like an old burn scar.  Thankfully, it can be covered by hair or makeup.   Just a warning to others though to be very careful - frostbite CAN happen.   

hbb - wish I lived closer, too.  Just too far away for me to even make a day trip feasible.   

Jun 25, 2012 01:42 PM reneerDSM wrote:

Hi,

Could you tell me how you got through the 4 Taxols?  I finished the AC on Friday, but I am nauseous just thinking about putting on the caps for the long day of Taxol.  Did you do anything for pain relief?  I find the caps much colder now that my hair has thinned.  The second cap was almost unbearable this last time. Has anyone out there used a thin cap on top of the hair while your hair was thin?

Jun 25, 2012 01:55 PM dancetrancer wrote:

Jun 25, 2012 10:35 PM hbb wrote:

That's awesome dance. I can't wait to be in your shoes!

Jun 26, 2012 07:08 AM Laura5 wrote:

makingway, I took an Alieve about half an hour before the first cap and it lasted all day. That is great that you designed a place for new users!

Jun 26, 2012 09:00 AM Leveled wrote:

Congrats dance.......so happy for you. I am six weeks pfc and I feel great physically.
I am still shedding which is discouraging. I am taking iron, silica and biotin. I hope it stops soon. I lost the most after the last tx.

Experts out there what about eyelashes and brows? I lost some, have some large holes in the brows, but I also think I see new growth as I am in the mirror constantly.....lol....

Will they completely fall out?

Jun 26, 2012 12:26 PM dancetrancer wrote:

Oh yes, I surely do remember makingway!  I was petrified!!!  So all you newbies...take heart...it's normal to be petrified and scared as you go along...it gets better and then you'll see you saved your hair and will be doing the HIGH 5 HAIR DANCE just like me! 

hbb, I replied about the period on the TCH thread.  I'm washing today, too...here's to minimal shedding for both of us!   Don't be surprised if you notice more today - the last wash before my 2nd TCH is when I noticed my shedding start.  Better to be mentally prepared! 

leveled - my most recent wash (after my 4th TCH) I do believe I lost the most, too, of all my washes.  We'll see what happens today.  Even if I lose a bunch, I am WAY ahead of the game compared to no hair at all.  Staying positive!

Thanks all for all of the congrats!  

Jun 26, 2012 06:35 PM, edited Jun 26, 2012 07:03 PM by LeesaAnn

Well ladies, the day has finally come when I can say the following: I am 5 months PFC and I've finally stopped shedding!!! Woo HOO!

I started shedding around day 20 after first chemo, (Nov 29, 2011) and didn't stop until recently. So in all, that's 6 months of shedding. Heaven knows that there were many times when I thought it would all fall out. I had some very dark days of worry, panic and TEARS as I had big sheds after each chemo and constant shedding throughout. I have fine textured hair and it's thick (was). Some say that those who start with thick hair, lose more. I think I've lost 1/3 to 1/2 of my hair. It seems shocking to realize that. My hair is very thin in comparison to what it was in the beginning, but as I notice other women in public, I see women with less/thinner hair than I have. I guess its all relative to what you are used to. No one can tell I've had chemo.

I cut and colored my hair 2 weeks ago with a semi permanent color, with no ill effect. My hair stylist noted that the hair along the sides of my head and around my face is the most thin. I have new hair growing in all over my head, and its funny to see me in a pony tail with the fringe sticking out everywhere. I have an area along the nape of my neck where i lost hair on the first chemo. I don't think it was covered by the cold caps. Regrowth started during chemo and its growing in very fuzzy/curly. It's about 2.5 inches long now.

All in all, I'm very grateful and happy that I had the option to use cold caps. I won't sugar coat things and tell you it was easy (it wasn't impossible, but it was challenging at times) but I will tell you it was WORTH IT! This is how I viewed the extra work: Basically, for wearing the cold caps for approximately 32 hours (I had TC x 4), and keeping a modified wash/hair care routine for 6 months, I avoided baldness from chemo. I know the other ladies in my chemo group (who are now just feeling confident to go without their wigs and have about .5 inch hair growth) all have said hair loss has been the hardest thing about getting through chemo.

Thank you to the cold cap veterans who talked me down when I was having bad days of fear and worry. Everyone said, "Don't worry, you will have hair in the end" That didn't seem like much solace during my panic (LOL), but they were right. I have hair in the end. Just know that if you are reading this and you are shedding heavily, I feel ya sister.  I know your fear and worry. You think that you will be the one for whom it doesn't work, and you will end up bald. Or you will end up with hair so thin that you will need a wig. I've noticed the new hair growth is giving my thinner hair some lift at the roots, so my hair is looking thicker lately. Also, getting rid of the gray made it appear fuller.

I'm sending out my love and support to everyone currently going through the process. I can hardly believe I can say I'm done, that I've stopped shedding, but I have! Hooray!! I think its important that women understand that while they will have hair in the end, it won't be like the head of hair they started with. I didn't really understand that going in. It's not bad, its just different (thinner with all this new shorter hair growing in all over my scalp). It's a mystery who will shed more or who sheds less. It's very worrisome if you are one of the ones who sheds a lot. I'm here to tell you that you will make it to the end, and you will be grateful, SO GRATEFUL, for the hair you end up with. I AM!

Keep on keeping on Ladies!

xoxo,
Lisa

Edited to add photo (last weekend at my 30th HS reunion)

Jun 26, 2012 09:19 PM, edited Jun 26, 2012 09:24 PM by LAZ