Happy: A Quest for Life After Death

Saturday, January 31, 2009

He's in!

Mat found out on Friday that after his battery of tests on Wednesday and Thursday, he qualified for the clinical trial. It was no small feat -- we got very excited about a clinical trial last July, only to find out Mat couldn't participate because of a marker in his blood related to heart function. Apparently the researchers on this trial don't care as much about his heart, which is fine with us.

If you hadn't guessed, it's very scary to have a life-threatening illness that is not being treated because the treatment options are exhausted. Hope does sometimes come in a bottle (in this case a bottle of pills), and being without a bottle can leave one feeling rather exposed.

Treatment starts on Tuesday with an 11-hour stay at MGH for poking, prodding, and testing. One negative of a clinical trial: it's research for the greater good (not necessarily the patient's good), so there are many more tests. One major positive of this particular trial: the drug comes in a PILL! No infusions, just weekly trips to MGH to be observed actually taking the pill (and then be observed for sometime afterward).

This is a Phase 1 clinical trial, which means the drug is fresh off the "mouse model" it was initially tested on. (Mat is hoping he doesn't sprout a tail, but quite frankly it's preferable to the side effects of some of the other drugs he's taken.) The goal of the trial is primarily to study the drug's side effects at various doses. People who join the study early are given low doses -- doses that probably have minimal side effects, but that also may be too low to block cancer growth. Mat is joining the study in the sixth round, which may mean a high enough dose to have some effect.

To recap: Nearly four years, two major surgeries, and four different chemotherapy regimens later, Mat is starting on a fifth chemotherapy regimen.

Fifth time's a charm? We hope so.

Wednesday, January 28, 2009

Fingers, toes, arms, and legs crossed

Mat met with Dr. Dave today to talk about clinical trial options, and it looks like there may be a match! It's a drug that works to block several of the pathways tumor cells use to grow like kudzu, rather than just one of them. It sounds like a good plan -- we hope Mat will have a chance to find out.

There's a round of tests to determine eligibility that will wrap up tomorrow afternoon, and by the end of the week, we should know whether Mat's eligible.

I'll keep you posted.

Monday, January 05, 2009

Mat and Steve Jobs

Important news flash: Steve Jobs (Apple CEO) today announced weight loss and a "hormone imbalance."

Mat and Steve Jobs have something in common -- can you guess what it is? Nope, Mat is not also the CEO of Apple. Jobs also has neuroendocrine cancer. We hope he's really experiencing a "hormone imbalance," but my guess is his cancer has returned after a relatively lengthy remission (four years or so). If I had a NICKEL for every person who told me four years ago Mat was lucky because he had Steve Jobs' kind of cancer, and not some other kind, well, I would have about a dime. But I'd have to guess Mat doesn't feel lucky.

Also today, we met with Dr. Dave to review Mat's latest scans. The "shmutz" in the lungs from the previous scan are now actual, identifiable tumors. The growth from the last scan is very small, but important. It means the Torisel is no longer working, and Mat is back in the market for a new chemo regimen.

The list we had to work with last July, when Mat started on the Torisel, was pretty short. Now it's shorter. Somehow, with all of the oncological experience, insight, and wisdom we've amassed over the last four years, we have to decide whether Mat should start on a chemo combo of adriamycin and streptozocin (a drug combination that flattened him when he was healthier and had 20 more pounds on him), or try for a Phase I clinical trial.

All drugs now on the market started as Phase I clinical trials, but right now that option feels more like a step toward accepting that we might have reached the end of the medical rope than anything else.

The scan results notwithstanding, we still have things to be thankful for. Unlike Steve's tumors, Mat's are "nonfunctioning," meaning that they don't secrete hormones and make his body do weird unpleasant things; the tumor growth from the last scan was small; Mat's weight has been pretty stable for the last few months; and it's been a great four years.