[annettchen]

I live in Canada - Toronto.

They transferred me to Sunnybrook (Dr. Sahgal) who is said to be a capacity in the field. He said he was going to do SRS up to 10 lesions. I was at 9 with the initial MRI they did at my usual hospital. They then redid the MRI at Sunnybrook with a machine that takes "thinner slices" for lack of a better word, and found 15. So they told me that was it for SRS; SRS no more.

I pleaded. I begged. I told them I did not want WBRT. In the end they told me unmistakeably that they will NOT do SRS on me, and not treating with WBRT will mean another 2-3 months to my death. I cannot run that risk - my daughter is only 7.

I have been running around with the mets untreated for a month now, and am simply terrified. I asked whetehr they would be willing to combine SRS on the 4 that are measurable (largest one is 9mm in the cerebellum), and do chemo to get rid of the "sprinkling" of specs elsewhere. The answer was no - chemo is not effective in the brain. I brought up Lapatinib. I brought up ARRY-380; to no avail. I also brought up IT Herceptin - answer was no.

They did say they were going to do a procedure where they will spare one of the two hippocampus (I forget which one, I guess it does not matter) hoping to reduce side effects.

They also told me that with treatment, they give me another year, maybe two if I'm lucky - that's likely the reason they are genuinely unconcerned about long term side effects - because there will be no long term for me. I will certainly try to prove them wrong, but...

It is interesting, though: apparently they will NOT give me steriods. I asked, and they told me I can drive myself to / from treatment. The only side effect they expect to see is short term memory loss (and alopecia, of course, but reversible).

What I'm trying to do in addition is to get on D,L Methadone - it is said to increase the effectiveness of chemotherapy and (to a degree) radiation treatments as well. Clutching at straws... :-(