Cold Caps Users Past and Present, to Save Hair

I would love to speak with someone who was/is being treated at UCSF about how to manage the four hours post chemo -specifically getting home and keeping the caps cold enough. I have about an hour drive. I start TCx4 on Friday. I'm very nervous but hopeful!

MOMof4:  I drive 90 minutes home from chemo and the dry ice I pick up lasts through chemo and well after the 4 hours.  It is so doable.

Annie I too sport a super cute hat by the end of the wash cycle.....I actually love it!  It's rather stylish....oh and hides my roots too (bonus!!!). 

friends

did anyone do CC with DD AC?  looking through this thread, I see lots of mention of TC, PFC but not adriamycin.  do they not work with AC? ... I think that's what I am going to get.

thks

brca1babe

Just chiming in,

 I am 6 weeks PFC and still shedding like crazy, I have to wear a hat all the time because of two huge bald spots right on top. I also have a 3/4 fall I wear under my hat on special occasions to make my hair look thicker. I also have a wig for back up. I see new growth on my bald spots but not enough to cover it yet, Can't wait for that. I am still grateful I have hair. I will probably end up cutting it short in a few months to make it look thicker. I also will sedate myself on my next hair washing (tomorrow) as a lose a lot at that time.

What is a cold cap? I just got a port put in today. scared to death about what's coming.

Hi momof4girls (are you by any chance the person I've been emailing directly with?) I have coached another woman who is at UCSF, she emailed tonight and is doing great  -- one more TC to go. The staff there know the caps and system well, and she's been able to stay there to do the four hours post-infusion, and another time she brought some of the caps home with her to finish the night (then returned them immediately).

Feel free to PM me if you'd like her contact info, she's happy to help others at UCSF.

Best,

Susan 

yes, that's me.  I did email the other woman at UCSF.  Thank you so much!  I am now trying to get coverage for my kids so I can stay at the hospital for the four hours after.  It seems a lot easier than trying to get dry ice.

I am applying the elastogel cold caps to my friend who has her 4th (and last) infusion of dose dense AC tomorrow.  She has kept her hair so far.  Because the infusions are every 2 weeks, we believe she has gone through only 2 sheds.  So, we remain cautiously optimistic.

I wanted her to do penguin cold caps but instead she bought 5 used elastogels on Ebay.  During premeds we do two 20-minute cap changes, start the adriamycin ten minutes into a third 20-minute cap, and then do 25-minute cap changes for the rest of the adriamycin push, through the hour of cytoxan, and then at least 4 hours afterwards.

We are a very mobile operation.  Went out for sandwiches after the first infusion, and did the cap changes in her car.

Another woman who is using penguin cold caps every week for 18 weeks (!) in Santa Cruz developed a relationship with a family-owned dry ice distributor in Watsonville. They are now rooting wholeheartedly for all our local cold caps users, and giving us an astounding price on our dry ice.

Morning all:

I tell you, I think I preferred the drive home and stopping every 20 minutes to change the caps than sitting for another 4 hours at the Center.  Our drive home went quickly, believe it or not, and when you get home you only have 2-1/2 hours left in the comfort of your own home.  But, we are all different and what works for one isn't the best for the next.

Good luck!

Arlene

Hey MDG, the shedding subsided by 50% but it is still coming out. I washed today and lost allot but I think by next week all will calm down. Still no one can tell but me , I had allot of hair!  had being the operative word.

Hi All:

As for hats...I love them and wear them all the time, so when my hair looks like crap, I just wear a hat and since I have always worn them, no one thinks anything of it. I think they look better than a wig, unless you have a really good wig.

Best wishes to all of you doing chemo, and congrats to those who have finished!!

By the way, I have done 13, tomorrow will be #14 out of 30 radiation treatments and so far, so good. A little redness and a little swelling, but no pain, and no problems. No fatigue so far.

Keep Positive-Keep Smiling and Laugh Alot!!!

Nancy

I might be getting ready for a hat as mine is really scraggley.  I do wear a ball cap a lot especially when it is so windy.

Ladies:  I'm 11 days post #4 chemo and dealing with the yucky stomach.  Nothing wants to stay in it but when I "go", I only go a little and often.  What to do for this?  I haven't had a normal meal in nearly a week because of it.

Thanks, Arlene

Hey Arlene sounds awful, I feel for you! Try rice its binds you natually and I did get bladder infections after TX 3 & 4 never had them until chemo

My sister tangled her hair using Kiehl's shampoo Sunflower 'color perserved' shampoo!!

First she used the Kiehl's sunflower color preserving recovery pak conditioner and then she thought the conditioner felt to 'heavy' so she used a little bit of the Kielh's shampoo (Sunflower color preserved shampoo) AFTER the conditioner. The shampoo put her hair in tangles. Is there a detangler she can use? Also, what is the best shampoo, or conditioner, for the future? Thanks for the rescue.