Topic: Penguin cold caps

http://www.msc-worldwide.com/

hi nasharayne,

I have seen some case studies where they do work, and the pros seem to outweigh the cons so I'm going for it. If it doesn't work, I'll live with that, but I can't see me not even trying.

Basically that is true. For some people it works, and others it doesn't. They report an 88% success rate though, and I like the odds.

1. Well...i can say that at the outset, I am dissapointed in the fact that there don't seem to be any black people either using the caps or unavailable to speak to me about them. 

2. They are fairly costly...about 30 a cap and I'll need 14. this is a per month charge. and there is a 300.00 deposit plus shipping costs.

3. I have my first tx on the 11th. I'll keep this thread updated as I go along.

Hi Malaika:

Please keep posting your results.  I'm going to MD Anderson tomorrow and I'm going to ask if I can wear these.  My tests are still coming back but I am HER2 positive with two tumors (1 is 9 cm!!) in my left breast.  I am hormone receptor negative so my 1st onc. told me I would get TCH every three week for 6 cycles.  I think that will change now that I'm switching to MDA.  I'm anxious to hear how it works for you.  Good luck!!

Carol

Malaika,

Thanks for the update.  I didn't get your cocktail so, I can't tell you when the hair should fall out but, I really hope this works for you.

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

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.

Linda,

I understand that now. We understand our hair and its importance to our culture and connectedness to one another. I mean Chris Rock just made a movie about it.

The question was looming in my mind before chemo:How long will "it will grow back" really take. Especially since I'd been growing my hair out for years to reach a good length.  

I would like for others not to have to go through chemo induced alopecia if it can be avoided.

If anyone has any questions about how to do this and want to pm me. feel free. I'll respond. I want you to know that I'm not employed by the pcc company. I'm a grad student that wanted to get through this without if affecting my standing/perception in school...I didn't want people asking me questions or staring at me ...or treating me with kid gloves. I hate fake shit. but deep down, I think keeping my hair was just as important to me. I do love it. Messy and standing all over my head, I love it. Good luck guys and I'll update again later.  

Malika,

Just WOW!!!  After hair loss two times already behind chemo, this is "Amazing".

Keep us posted!!

Linda C.

hi arbella

1. yes

2. no

3 nope

Good luck...its a breeze

Dear Malaika,

Thanks for sharing the info about cold caps.  I  have never heard of them either and have found the whole process you have shared to be interesting and encouraging.

For me, the chemo I had to use (Andriamycin-this was the source of my hair loss! cytoxan & taxol), took my hair out in less than two cycles. 

Stay strong!

10 weeks completed, 2 weeks left, and i still have my hair.