Penguin cold caps

Yep! I've been helping 2 women with the caps, and they do work. They are both on the Taxotere/Cytoxan regimen. You can go to the website to see the effectiveness of the caps when on various regimens. Look on the 'Drug Compatibility' page. http://www.msc-worldwide.com/index.html

If you have any specific questions feel free to PM me. 

I am using the Penguin Cold Caps and still have most of my hair going into my 3rd TC infusion on Fri, 9/4.  Because I am getting neo-adjuvant (before surgery chemo), the actual effectiveness of the chemo on my cancer is able to be observed. 

I had an MRI on 8/24 and an appt with my onc on 8/26.  He was visibly excited when he came into the room to talk to me.  He said that I had a phenomenal response to my first 2 infusions and that such a strong response this early in the TC regimen is very unusual.  The 2 smaller tumors are no longer seen on MRI and the volume of the primary tumor had shrunk to 35% of its original size.  He and his staff were also surprised to see me show up with a full head of hair.

The cold caps do not seem to have had any adverse impact on the efficacy of the chemo drugs in my case. 

malaika, I am the one who told Frank about the other thread on this forum that another PCC user had started.  If he said he thought "his" ppl were posting here, I think he meant women using his cold caps, not employees. 

Hi, Lori, that's great news.  I  meant that the use of coldcaps was thought to adversely affect the action of chemo in the brain area only, not overall.  The fear is that if there are any brain micromets the cold cap will prevent the chemo from working on them.

malaika:  I see that no one has answered your questions, so I'll do my best. 

1. I don't know anything about a patient representative.

2. You definitely need help with applying the caps.  The helper has to go to the cooler every 30 minutes, select a cap that had the proper temperature and help apply it as tightly as possible.  It would be very difficult to do with 2 free arms and with an IV in one arm, impossible IMO.

3. I don't know of any black women who have used the caps, But I've only spoken to 4 women total.  Frank would be your best source of info on that.

4. I follow the no heat styling rule with the exception of an occasional use of a curling iron on the longer parts of my hair away from the scalp.  If I use a blow dryer, I use it on the cool setting for as brief a period as possible.  I'm very gentle with my hair and even wash it less often than usual.

5. The company can provide you with the cost, which is in pounds that get converted to dollars.

I hope this is helpful.  It might also be a good idea to consolidate this discussion on the other PCC board as more have participated there.  Feel free to PM me if you want my telephone number to ask more specific questions.

Best wishes!

klambert: the website for Penguin Cold Caps is: http://www.msc-worldwide.com/

The telephone number for the UK President/inventor (Frank Fronda) is 011-442-0869501.  Please rembember that the time is 8 hours later in the UK vs. PST.  The time change is difference for other time zones..

Best wishes.

I have just finished my last TCH treatment 12/09/2009.  Will continue with Herceptin until July, 2010.  I used the Penguin Cold Caps and am pretty pleased.  My hair has thinned quite a bit especially after the 5th treatment but I don't need a wig.  I have not lost eyebrows or eyelashes and still have to occasionally shave my legs (go figure).  Anyway, my new thing to stress over is I have found out I will need to take tamoxifen which has thinning hair listed as a side effect.  I was looking forward to my hair thickening up.  But, I guess that is not going to happen for me.  Does any one have any experience with this?  Just wondering if anyone used the cold caps with success only to lose their hair when they had to take tamoxifen.  Thanks so much for any replies!  Angie