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Old 12-08-2004, 11:56 PM   #1
Martha
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Hello all,

This is Martha here in Seattle, Washington. I am a regular on the bclist (3 yrs out from dx of Stage 2, highly aggressive, invasive ductal c, e+, pr+, her2neu- and currently NED). I have just registered here in order to ask some qs on behalf of my friend in Massachusetts (although I am encouraging her to subscribe herself) so I hope that is OK!

Here's her story: Lavinia was dx'd in her early 40s. Her tumor was her2neu+, e-, pr-. She had A/C, mastectomy, Taxotere, focal stereotactic radiosurgery, WBR, Herceptin, then Herceptin+Navelbine, then Herceptin+Xeloda (I think that order!)

She says, "Xeloda is losing its effect on the tumors and, although some
things continue to decrease in size (multiple small liver lesions),
other tumors have somewhat increased in size (mass in right adrenal
gland grew from 2.1 cm to 3.5 cm mass). The pleural effusion in my right
lung is constant; it's described as "large" but still gives me no
apparent difficulty, i.e. breathing difficulty, coughing." At last
report her brain tumors were "practically gone.'

Now she will be switching from Xeloda to Carboplatin, getting the
Carboplatin on a 3 wks on/one week off schedule, and continuing the
Herceptin (wkly), and Zometa (once every four weeks). She says, "Neither
of these drugs drops my blood counts or causes hair loss. I plan to
continue taking Glutamine since the pamphlet given me in onc notes peripheral neuropathy . . . as a possible side effect."

So, what she would really like to know, from anyone who has taken
Carboplatin alone or with Herceptin, what side effects did you get? Did
it cause hair loss, hearing loss or deafness? Neuropathy? How hard was it to deal with the side effects? Did it work well?

One person on this list posted that Herceptin+Carboplatin+Taxol worked much better for her than just H+C---is that the general experience? I wonder, myself, whether she shouldn't get a second onc opinion---but then, I've been pushing her to do that all along, and she never did. I was the queen of second opinions---I interviewed 1 naturopath, 2 surgeons, 2 oncs, and 4 radiologists!

And anyone with experience with a tumor on the adrenal gland?

Any and all replies most gratefully received.

Martha
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