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Old 01-30-2009, 03:53 PM   #7
Lani
Senior Member
 
Join Date: Mar 2006
Posts: 4,778
snufi

I heard Dr. Slamon talk in October at a conference he was hosting of a new trial of adjuvant avastin and herceptin combination (don't have my notes as to whether they required any chemo before/with but seem to think they did not) and know there are adjuvant trials (abroad vs US) attempting to combine herceptin and an AI only without chemo (these were already done in the metastatic setting and reported at a conference in Istanbul in 2006). Don't know if these adjuvant studies are just in the planning stages or already underway and don't know if having one dose of chemo precludes you from qualifying from them (it might)---but these may be things to look into. There also would be other chemos to combine with herceptin besides the taxanes (the FinHer trial utilized other chemos and the Herceptin adjuvant trials in the EU and the rest of the world besides the US were done after a course of "any reasonable chemotherapy agent" so some got Navelbine, Gemcitabine, Capecitabine, CMF, FEC etc. Are you going to a University teaching hospital cancer center or to a community hospital/clinic/private oncologist's office. There used to be a Dr. Vogel (Charles) who spoke at conferences who made his name by offering alternative chemos to cancer patients if Florida (if they were too vain to lose their hair, he joked). He remained an oddity at conferences but there may be flexibility out there and you can't be sure there isn't unless you seek it out. I think I also heard of a trial of Capecitabine and lapatinib adjuvantly, but that may be further off.

Oncologists attitudes towards off-label use and flexibility may differ.

Even if it ends up you do not qualify (due to prior chemo, distance to trial center, etc) at least you may feel you did all YOU could do to research the alternatives.

Just today someone on this website reported that they survived 5 yrs and did not get herceptin-- statistics may end up being on your side.


One topic to think about. Theoretically tamoxifen without herceptin may not be as effective and may even be worse than an AI without herceptin in her2+ER+ patients who don't get herceptin(and neither may turn out to be as good as Faslodex, according to Dr. Slamon's talks at various conferences). Faslodex is not usually given unless one has failed tamoxifen and/or AIs or is unable to tolerate them (iffy)

You might discuss with the oncologist what they would be willing to treat you with should the cancer come back...and why they are not willing to treat you with that now. They may say there is no proof it is as good as the accepted treatment...but since you are apparently not willing to undergo the accepted treatment, that becomes mute.

These are discussions they have probably not had with patients...a college friend of mine who is an oncologist told me in 30+ years of treatment she only twice had patients refuse chemotherapy, and she primarily treats a cancer for which there is FAR less chance of chemotherapy helping.

I heard Edith Perez, the head of all the North America adjuvant trials of heceptin talk at a conference about how she even recommended that her father, in his 80s, undergo chemotherapy for colon cancer. I am only pointing out that few oncologists even think about the fact that some patients can't or won't have chemo and may therefore not have a Plan B.
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