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

Sep 28, 2009 08:56PM shadow2356 wrote:

I am going to need chemo after  my surgery. They said I would lose my hair. This upsets me more than losing my breasts, strange, I know.  These cold caps are giving me some hope that I might not have to lose it. How much do they cost? I am very interested in hearing more about them.

Thanks!

Sep 29, 2009 04:15AM London-Virginia wrote:

Hi there - I am in the UK - I am using cold caps and it is working well.  I have certainly thinned out a bit, but still have a lot of hair and it looks ok.

Good luck!!

Sep 29, 2009 08:54PM gmp300 wrote:

Bump

Sep 30, 2009 10:36AM gmp300 wrote:

Hello Virginia,  

      Glad to see your still here!!   How are you doing?   I hope all is well! 

Take Care--Geri

Sep 30, 2009 05:45PM gmp300 wrote:

Hey Virginia,

     Iam glad you have lots of hair!!  Yeah!!!    Thanks for reminding me about the honey!!  My brother (he passed away last year)  had MS for 30 years.  He was totally disabled.  (Love you MIke)  the last few years he had very bad bed sores and we put honey on them and they started to heal.  I heard that about honey a long time ago.  Also this little old lady that I met at Curves (an excercise place) was a bee keeper and she put honey on everything.  Even when she had an eye infection she would put a little on the outside of her eye and it would clear it up.  Hey --maybe I'll put some on my foob!!    Thanks Again--Geri

Oct 2, 2009 12:14PM London-Virginia wrote:

Great job Beth!!   I had my 3rd FEC chemo today, and met a lovely girl names Sharon who was there for her 1st treatment, and fist use of the copld caps, so ti was neat as we had a good old chat, and her husband was there and we had a nice day and I was really happy to be able to give a bit of support to a chemo-newbie.

My hair is till there, I haven't lost hardly any this last week, which is actually better than before.  So - good luck and stick with it !!!

Geri - aren't bees fantastic little pals?  There is a thread today about a new trial on bee venom targeted on cancer cells - it is in active topics, have a look.  Early days but yet again - our little friends are doing a good thing for us.

I had grumbly boobs this week so put a little tiny bit of the bee dressing on and hey - guess, what, happy boobs!!!

Rather a fun coincidence, the area in London where I live is called Battersea (it is right on the river and the vikings kived here thousands of years ago) and out Borough sybol is none other than the bee!  In Vitorian times, this was a farming areea and much lavender was grown here and lots og hives of bees.

So, bees seem symbolic to me of nice things in my life.

Live long and prosper girls! xxxxxxx

Oct 5, 2009 06:01PM Thankful1 wrote:

New to the board here but wanted to post to let everyone know about my experience so far using the Penguin Cold Caps.  I had my first treatment of TC-H on 08/05/2009 and experienced very little hair loss.  My treatments are three weeks apart.  My second treatment did not go well and I was fairly ill afterward.  I also experienced the heaviest amount of shedding after this treatment.  The shedding seemed to come mostly from the nape of my neck where my hair is thickest.  After my third treatment, I experienced much less shedding than after the second treatment.  I have started using the caps during the week just straight out of my freezer.  I do not put them on dry ice like on chemo day.  This seems to stimulate my hair folicles and I believe helps reduce the amount of shedding. Since the caps are not so cold, they sort of feel like a "spa" treatment. I would say that so far I still have at least 90% of my hair.  My husband says he can't tell it has thinned at all. I will have my 4th treatment this week.  Overall, I would say that so far I am very pleased with my success.  I will post again soon to advise if anything has changed.  I had the pleasure of speaking with Frank, the inventor today.  He is a wonderful man who calls us "his girls".  He has given me valuable advice and I feel like he is interested in my success and is very willing to help me.  Good luck to all!

Oct 6, 2009 08:49AM ladymd63 wrote:

I am about to start chemotherapy in NYC and could use advice or assistance about cooling the caps during the sessions.  I will be staying at hotels while traveling from out of town for treatment.  many thanks.

Oct 10, 2009 12:01PM malaika wrote:

Hi all....

okay it is the day before I begin my third tx. I am losing my pubes!!!!! I tugged on a little portion of my head hair and it is still attached tightly. I'll post again on Saturday or sunday if something dramatic happens with my head hair..

 Oct 4, 2009 12:19 pm malaika wrote:

Okay...so it is sunday. Day 15 after first treatment. So far I've had three treatments of taxol..one including carboplatin and no hair loss. I am still reserving judgement (thats the scientist in me) until later on. Why? well, so woman somewhere said that Frank (the caps inventor) told her that if she hadn't lost hair after 21 days she wouldn't. I'm still 7 days shy of that 21 days. I am assuming that he is basing his statment on something factual and am trusting that to be the truth for now.

Some hair did come out in the comb yesterday, but it didn't seem like an overnormal amount to me. Moreover, it didn't have follicles attached. I think I broke it off in the velcro attached to the caps and when i took my braids out, it came off. Still..it really wasn't that much at all. I lose far more than that when I comb my hair roughly on any given day. So. I'm still hopeful. I'll give another update in about a week. after the next treatment or if something dramatically devastating happens

A few seconds ago malaika wrote:

Day 22

Setbacks and success

Setback: So on the first day of treatment I got the pccs too cold. They froze to the point of burning my scalp in the front/top of my head. It was obvious that they were too cold on that day, and the burning became evident in the days thereafter. It was quite sore, and a scab formed. It eventually peeled and dandruff formed daily in the spot. I didn't say anything about it because it didn;t seem to affect my hair.

Well on the thursday before my 4th treatment, I noticed that long strands of hair were coming out of my head. I checked for follicles, and they were obviously attached to the strands. I wondered if I was getting the shedding other women talk about on the pcc threads elsewhere. Then, I checked that spot that had burned and noticed that it was devoid of hair. The entire area that had been burned was bald. Looking closely, I noticed light stubble in the area. So some of it broke off and some of it came out in that area. It is a small spot, and easy to cover because I haven't lost any hair anywhere else. My hair is fairly long and quite thick. And the hair next to the bald spot looked as wavy and shiny and thick as ever. So I chalk this up to overzealousness at the outset. 

I caution all you ladies who decide to try this process...if you feel that you're burning your scalp (I had a perm phase in jr high school...it feels just like a  perm application thats gone on too long) Be more mindful of getting the caps warmer before continuing. This is a problem I think because the caps get colder in the top generally and its easy to be impatient waiting for the things to warm up a bit.

Now the success:

As I mentioned before, my hair on thursday was every bit as thick and long as it was when i started the pcc treatment.  I've heard women say that they lost their hair a month out in one night after their third or fourth treatment on the regimen that I'm on.

This hasn't happened to me. I'm 22 days out from the 1st treatment...I have not thinned at all. I guess my new goalpost will be on day 30. I'll let you know if things change for me. For now, I have to say that these caps work, and I find that they were worth the cost even though I don't think that I really needed more than 5 caps at a time. I keep reusing the same few caps and haven't had any problems getting them cooled down appropriately.  I can say that they are worth it now because I found myself unexpectedly horrified when I lost that bit of hair in the top. Its a small area, and covers, but moving my hair away from it and looking at the white patch of scalp moved me in ways I can't describe here. I knew then that I wouldn't take the loss of my entire head of hair very well.

I'm also a bit concerned now that I might have a delayed loss of hair....I'm very much looking forward to ending this regime.

Oct 10, 2009 05:09PM gmp300 wrote:

Hello Maalaika and Sunshine,

     Iam so glad that you are trying the cold caps.  I used them in May and July and I kept 90% of my hair.  Frank is so wonderful.  He will help you's any way that he can. 

     Malaika---  I know how you feel waiting and wondering if your hair is going to fall out of your head!!!  Thank the good Lord that it doesn't!!  Every morning I would look at my pillow afraid to see a clump of hair and I DIDN'T!!     I would say "Thank you Lord for letting me keep my hair!"  Every morning!!  I counted the days to get past the danger zone.  I had 4tx of taxatere and cytoxin.  My first three tx went smooth.  The caps were the right temp and they where on right and tight.  I had a little shedding for about a week but no clumps--just strands.  My 4th tx went a litlle bumpy!!  I didn't have enought dry ice.  The caps were not cold enough when I was suppose to start chemo.  I told the nurses  "No way am I getting chemo without my cold caps on!!--especially my last tx!!,  Iam not loosing my hair now!!"  LOL !!   My dh went and got more dry ice and then they were not evenly the right temp so I waited longer.  Then everyone was growing impatient and I started--then they were to cold and did not fit right  etc.  The whole day seemed screwed up!!   I went home in tears scared I screwed it all up.   Well count down began again and I prayed.  Well Iam now 2 months out and still have my hair.  I did shed more than the first 3 tx but I am happy with my results and I have 90% of my hair.  I remember before chemo my brush was always full of hair!!  I never worried about it before!   Now I baby my hair and am thankful for every strand!

     The point is that each tx is it's own and to have good results you must do it right.  To cold is not good either.  That is why you must need the caps and bring them down to -35 and not colder .  Plus if they are too cold you cannot fit them airtight on your head.  I would take my cap out of the cooler 10 minutes before my time was up to change my cap--my dh would knead it and check that the temp was consistent thruout the cap and had it ready to change.  So that when one came off the other one was ready to go right on.

   Good Luck to both of you's and thanks for sharing your results!!  Geralyn

Oct 12, 2009 09:11PM Can-D wrote:

I have no idea why it post two of every pic, but I cant get it to stop doing it...ergggg

Oct 12, 2009 09:43PM spar2 wrote:

Can D, your hair is lovely.  I didn't have that much at 7 MONTHS.  My grew so slow and then started to wonder if the arimidex was causing it to be so slow.

Oct 16, 2009 08:35PM Can-D wrote:

Lori, I too lost hair in some spots. Around my ears went totally bald...white scalp. And also an area right at the top, where bangs would be, about the size of a half dollar...where I pushed a tissue too far up.  However, my hair began to immediately regrow, and by time I was finished with chemo, these areas had at least a half inch of hair.  So keep it up and hopefully, your hair will start to regrow immediately as well.  Additionally, I too kept cutting my hair shorter because it looked stragely and thin due to the thinning.  Take care, Candy

Oct 19, 2009 01:57PM fa386 wrote:

Hi,

 Just last week I used the caps on my wife, and used a technique similar to what you are describing to get the caps cold enough (caps in 2-gallon ziploc bags underneath the dry ice, vs the trashbags that you mentioned). Biggest issue is that the caps got too cold: -38, -39 etc. Since they get less flexible at that temp,  it is harder to mold them well to your head. So what I started doing is removing the caps from the cooler 10 minutes or so before application time, and kneading them with my bare hands until they got cold enough (oince or twice I sat on them!). Pretty cold on my hands, but obviously not nearly as cold as on my poor wife as I strapped them too my head.

Oct 19, 2009 05:57PM NewportLori wrote:

My friend who helps we with the caps also uses the 2-gallon zip lock bags directly on the dry ice and the caps can get too cold.  My thought was always, better too cold than not cold enough, but following cycle #4, I had some ice burns on my scalp that peeled.  Frank said that -28 or even -25 is OK.  I'd prefer them to be in the -30 range however.

No Sunshine, the nape of my neck did not get cold enough even though the gel was cold enough, probably due to my larger than normal head.  I lost a lot of hair in that area and have continued to thin there.  After 4 full cycles, what's left is very stringy and I need to cut it extremely short.  However, I still don't need to wear a wig and am grateful for the hair I've retained.