Thursday, September 18, 2008

Embracing uncertainty

I had a scan yesterday, and the news was good -- mostly. (It would be really nice to have unambiguously positive results from a study, but it's just not in the cards.) My lymph nodes are all the same size, there are no new mets, my disease is technically stable. The pictures and a whole lot of my blood is now being shipped to Ariad, where they will review the information and determine if I am eligible to participate in the deforolimus study. If I get the OK, I'll probably start on the drug or placebo in late September or early October, just after my birthday.

So why don't I feel exultant? Well, I've been wiped out with another mysterious fever for the last couple of days, and in the interlude yesterday between the scan and the doctor's visit, I managed to put my iPod through the wash. (It looks great, but no longer works.) Also, the collapsed lung that had completely healed last month is back in a big way, and it may require intervention at some point. Fortunately, my nightmarish pleurodesis is still somewhat in effect, adhering the lung to the pleura at a couple points, so hopefully the lung won't completely fall down and require immediate action. The scan also revealed several small, hollow cysts on the surface of the lung, which my doctor and the pulmonologist she consulted believe are the source of my collapsed lungs. What's the source of the cysts? We don't know, but some sort of respiratory infection is a possibility. The tiny nodule they found in my last study, incidentally, occupies a piece of real estate that once contained one of these cysts, so they are now more confident that the nodule is not a malignancy. 

As I'm reading this, it's sounding pretty good, so let me try to explain why I'm so anxious. Part of the anxiety is just a learned response; I've gotten a lot of bad news over the last two years. Part of it is the fear of any cancer patient that something is lurking invisibly deep within the body, biding its time, lurking and waiting to rear up and do harm. Part of it is that I know of several epithelioid sarcoma patients who are dealing with pneumothoraces, some with visible lung mets, some without. (Have you had your lungs collapse four or five times in six months? No? Then you can see why I'm not convinced this has nothing to do with the cancer.) 

It comes down to the uncertainty, I guess. One of my mantras throughout this illness has been that we need to learn how to embrace uncertainty, or at least live with it, because the only certainties we're going to get are going to be bad. That's true, but it's a hard way to live. I'm trying, though.


Darwin said...

Do you actually think the Ariad drug works?

I'm being serious.

(a serious question about the drugs viability)..thanks

SG said...

Hell yeah, it works! Just kidding. I don't know, obviously. All I know about it is related to soft-tissue sarcomas, which it is farthest along in terms of. I have heard anecdotal reports on sarcoma bulletin boards about good responses in earlier deforo trials. I have heard directly from one of my doctors about good responses to off-label serolimus/rapamune (deforo's wimpier grandfather) given to patients in pretty dire circumstances (mixed reports in terms of epithelioid sarcoma, by the way). Bottom line: I think there is a place for mTOR inhibitors in terms of sarcoma and carcinoma, but I don't think they are miracle drugs, and I don't know whether the winner will be deforolimus, everolimus, good ol' serolimus, all of the above, or something else. I also think they will probably need to be combined with another drug to reach full effectiveness. Who knows how long that will take. All that said, the indications deforo is being studied for are pretty dire, so it's not like it needs to have blockbuster progression-free survival results to potentially get approved. I'll have more unscientific and semi-informed insights if I do the trial and if I think I'm getting the drug, but it's going to be hard/impossible to tell because the side-effects are relatively mild. My docs are pretty into deforo, FWIW.