A reasonable man

L. and I left the cold state for a couple of days to check in with Dr. Bow Tie (who, on this occasion, lived up to his nickname, wearing a tie that apparently required an MD-Ph.d. to divine how it related to his slacks and shoes). 

The goal was to get a plan in advance of the CT I will have next week, and we got one -- several, actually, depending on how things turn out with the scan. The hope is to continue on with Temodar, but I'm not sure if that's going to be possible. Although being relatively non-symptomatic makes it difficult for me to tell if my chemo is working or not, I tend to believe that the tumors have advanced a bit over the last couple months and we'll need to start something new. I hope I'm wrong.

Fun details of the NY Trip are TK, but here's a few paraphrased comments from the discussion that might interest people who know me or other epithelioid sarcoma patients:

• I "look good" -- I have "low tumor volume." I'm a "great candidate" for a clinical trial because I'm doing relatively well at the moment.
• Why did he try gem/tax again when my cancer began spreading this winter? Because you "go where the money is"; the tumor had shown some sensitivity to that drug combination before and enough time had elapsed to make it reasonable to think it might work again.
• What about temodar? How likely is a good or stable disease response from that? Temodar is a "reasonable choice." So why did he strongly prefer gem/tax after the tumors got into the nodes behind my belly, while my local oncologist advocated for temodar? Because we didn't know what would work best. There's no formula.
• How are you feeling about deforolimus? The mTor inhibitors have a huge amount of promise (some background here), but they aren't quite ready for prime time (though they may be soon). It may turn out that deforolimus needs a little help -- that it will work better in combination with some other drug.
• What about using rapamycin, the transplant drug, off-label as a substitute for deforolimus which is now pretty much only available in Ariad's SUCCEED trial (which is placebo-controlled)? He's done it, and he's even seen an epithelioid sarcoma have a mixed response to it, but it's a down-the-road option for me. Rapamycin doesn't have terrible side effects, so you don't have to worry as much about being too late with it. Incidentally, Dr. BT has also heard about ES responding to deforolimus.
• The caveat he pointed out is while it is reasonable to pore over study tables to look for epithelioid sarcoma responses, it's not a dependable enterprise because you usually don't know if ES has any particular sensitivity to the drug, or if the drug just happens to have positive effects for X% of soft-tissue sarcoma patients and the ES response was just the luck of the draw.
• I may be a good candidate for a trial of a new tyrosine kinase inhibitor -- a member of the "nib" family of drugs being actively developed by several pharma companies. Imatinib, dasatinib, sorafenib... etc.
• How about sorafenib, anyway? Could be a "reasonable choice."
• Other options? Maybe high-dose single-agent ifosfamide since I haven't had any ifos before.

None of this is, of course, is medical advice for anyone -- not even me. The doctors will consult after my scans and then we'll lock down a plan. 

It's great to have so many "reasonable" options; of course, the catch is that there is no compelling third-line drug for metastatic ES that would make more options "unreasonable." 

The clear options come earlier: some sort of doxrubicin-based chemo as the first line, gemzar and taxotere as the second line. Finding the best third- or fourth line defense is much murkier: I will keep you all posted about what we end up trying...