okay so this is kind of heavy stuff. this is not something you guys are going to like. I considered not posting it at all but I need to talk to someone and I dunno.
I emailed a guy who runs a website because I had the feeling the silence from einhorn and my oncologist, and the fact that people want to MEET with me rather than comfort me lately was ringing bad bells. here's the reply.
"I wish I could tell you that Dr Einhorn is a jerk and just didn't like you, but the fact is, if he didn't think the treatment was appropriate, then I have to believe him. It would have been nice to know why, but chances are it is because of the brain mets. Suffice to say, those are not good. The pills he gave you are not curative and will theoretically never cure you. I do know a guy who used them for close to 2 years, so they can prolong the onset of the bad stuff while you look for something else. I would keep taking them until you get a better offer.
Some of the very best doctors are quicker to turn you down for the salvage treatments because they really don't think they will work and they do think the treatments will make you miserable and may even shorten your life. I'm not sure what your opinion is, but doing something fun while you can is not a bad idea. There are stories on the TCRC where people did do that and are glad they did.
As for oncologists, you can try contacting a few, but chances are they aren't going to have anything better apart from a Phase I Clinical Trial - the problem with those is that they are for the benefit of medical science, not for your benefit. They MIGHT help you, but probably not. You can try contacting Dr Nichols in Oregon or Dr Bosl in New York or Dr Raghavan in Cleveland.
One last thing you can do is contact Dinesh. His story is on the TCRC in the extragonadal stories section. His cancer was similar to yours (though possibly not, since his HCG was elevated and your AFP is elevated), and he is still alive despite years of chemo. His chemo was very different from most TC patients, though I believe his doctor has since retired. Nevertheless, it might be worth asking about it.
His story is here:
http://tcrc.acor.org/stories/dinesh.htmlHis email address is: removed
You might also want to join TC-NET, our email support list. Others may have advice for you there."
the main bulletpoint is the one no one's been telling me but that I've suspected for sometime: Einhorn lied about the pills. they are not curative. I mean this guy isn't a doctor but it's a confirmation of what I've been thinking for some time.
I think I'm looking at terminal cancer here.
I don't know what to do anymore. I'm not giving up, I can't give up, but at the same time this is a blow. I had hoped the pills were secretly curative, but I knew deep inside it wouldn't GO DOWN like it did if they were. The silence only confirms it; these are pills for remission.
I think I'm going to die. I can't tell my mom this, but she's going to find out soon enough.
If there's anything you can find, help. If you can find clinical trials that are showing promise, help. If you have doctor friends, help. Dinesh's story is encouraging, but as the guy said, it's also different and he had no brain tumors. today my throat swole up a little. I can't help but feel its a tumor.
I can't believe this is happening. a 90% curable cancer, and I think I've lost those odds.
anyways I'm gonna email around a bit, feel a little lost. etc.
