Hair loss and cold caps

Ellie F · 05-01-2009, 03:27 AM

I wondered if anyone had any experience of using cold caps to try to prevent hair loss during chemo? I have heard varying reports about their effectiveness and their discomfort factor! Any thoughts?Thanks Ellie

Becky · 05-01-2009, 06:07 AM

I have no real experience but my friend did it diligently because her daughter was getting married and she didn't want to lose her hair. It did not work for her.

Ellie F · 05-02-2009, 01:50 AM

Thanks Becky
I was thinking of giving it a go in the hope that I might keep my hair this summer as I lost it last summer and it has only just come back!
Ellie

Christine MH-UK · 05-02-2009, 04:48 AM

Well, this worked for me when I was on anthracyclines before surgery; however, I decided not to use it after surgery when I was put on taxotere. The amount of time that you need to keep it on if you have a taxane is incredibly long and I would not have been able to tolerate it.

Cannon · 05-02-2009, 05:46 PM

I remember asking my onc about this when I was starting chemo - he said that it can help, but they also found a higher rate of skin mets on scalp for those who used it (a very low rate to begin with, so prob not significant).

But - the whole point is to let the chemo do its job, right?

jml · 05-03-2009, 05:31 AM

Hi Ellie~
Losing our hair once due to this disease is humbling enough, but to have to go through it multiple times, that's just adding insult to injury.
After my 1st year of tx, I was NED for a year. Just long enough for my hair to grow out & look like a hairstyle. Then NED disappeared, and so did my hair once I started back on treatment. Losing my hair a 2nd time wasn't any easier for me than the 1st, but at least the 2nd time I already knew what I was going to look like bald-and that familiarity was slightly 'comforting'.
Currently I'm at a crossroads w/choosing a treatment to deal with this newest recurrence. Do I go back to Taxol/Heceptin - which worked well in the past & brought me longer intervals of NED, but sacrifice my hair? Or try something new again -Tykerb/Xeloda/Herceptin & hope for the best possible results and keep my hair? I worry that I'm letting my vanity get in the way of making my choice.
It always drives me a little crazy, despite their best intentions, when people say, "It's just hair, it'll grow back," or "You look beautiful bald." My personal favorite is, "I see bald women all the time - it's not so unusual any more." UGH! They just don't get it. We carry the heavy burden of this disease, and we do so boldly & gracefully. I don't think it's so awful to wish the load was just a tiny bit lighter.
The cryo-cap just seems like too great discomfort for the risk/reward. When I was on Taxol, I used to have to put my finger tips in icewater b/c of severe neuropathy-loopy with the megadose of benadryl...that was miserable. Is there any possiblity that you can try Navelbine or Gemzar? (Unfortunately the Navelbine didn't work at all for me & the Gemzar worked initially, but stopped some time mid-cycle.) Or even Tykerb/Xeloda?
My docs are encouraging me to go on a study w/Taxol+Herceptin + study drug, because 1) they need to enroll patients 2) the GI side effects of Tykerb/Xeloda can be pretty severe/difficult. Personally, I'd rather endure the potential of massive diarrhea than the certainty of baldness, again.

Keeping you in my thoughts & prayers that you are guided to a decision that is best for you.

Jessica

alicem · 05-03-2009, 07:45 AM

Before I started my chemo, a BC survivor friend of mine warned me about the cold cap. She said she had read about some women in England who had used them and a large majority of them ended up with brain mets or skin mets. She said they thought the cold kept the chemo from doing it's job in that part of the body.

I asked my oncologist about this and he said he had never heard of such a thing. So, I don't know if it is just a myth or a rumor.