Carboplatin+Herceptin

[Martha]

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

[beatrice]

Hi, I don't know about carboplatin but I have been on Herceptin+ Cisplatin which I thing belongs exactly to the same family. Anyway, just to tell you my experience, I had this therapy for three months, on a weekly basis. I did not have any major side effects apart from fatigue, no problem with hair etc. Only, unfortunately it did not work much on my liver mets. They say response is subjective. Anyway, I am now on Herceptin+Xeloda, I hope that will work better.
Take care, Beatrice

[Lyn]

Hi it may have been me, just finished 26 weekly doses of Herceptin/Taxol/Carbo, it seems that the carbo only kept it stalled and then when the Taxol was added I became NED at last, but at a cost neuropothy in toes, bottom of feet, finger tips and site on side of neck and face which has been like it from the start, but hopefully it will fade. Had AC. CMF, Taxotere, Xeloda , Herceptin/Navelbine and radiation in the past but always seem to get a reoccurence just that bit further on, Oh I have been doing this since 1998 when I was supposed to have 2-3 years at best, showed them. Also Celebrex is being added to regimes, for the COX2 inhibiter, so if no major heart issues talk to onc about that, if not I will get on the band wagon again Flaxseed OIl Capsules 1000mg 4 a day, natural COX2 and Omega 3 for shrinking tumours, can't hurt gives you nice finger nails as well and stops cravings for junk food.

Hope this helps.

Hugs Lyn