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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
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