July 14, 2007 - How Long Have I Got?

“So, Doc, how long have I got?” That’s the question that often follows hard upon the dread announcement, “You have cancer.” With lymphoma – as an article in today’s New York Times makes clear – that all depends on what type of malignant cells you’ve got (Alex Berenson, “A Disease Affecting White Blood Cells, the Body’s Infection Fighters”).

It’s a companion piece to a news article about the radioimmunotherapy drugs Bexxar and Zevalin, and why doctors have been slow to prescribe them (an issue I dealt with in the June 23rd installment of my blog – “A Smart Bomb that Could Be in My Future”).

The Times article deals with the “Doc, How long have I got?” question rather bluntly:

“Doctors divide the disease’s many varieties into two broad categories: aggressive, and indolent, or slow-growing. Aggressive lymphoma can be cured in 65 percent to 75 percent of the cases. If it is not cured, patients usually die within two years.

Indolent lymphoma, which includes the follicular type, cannot be cured. But it typically responds to chemotherapy and can be put into remission for years in most patients. Eventually, though, it comes back, and each time it becomes more aggressive. Typically, patients survive about 10 years after their initial diagnosis, although the course of the disease varies widely.”

So, what type do I now have, aggressive or indolent? That’s the big question. Back in December, 2005, my grading – according to the Memorial Sloan-Kettering pathologist, who differed from the local pathologist – was that I have “B type, diffuse mixed large and small cell.” This actually demonstrates characteristics of both grades (large-cell lymphoma is aggressive, small-cell is indolent). For treatment purposes, “diffuse mixed large and small cell” is categorized as an aggressive lymphoma.

About a year ago (see blog entry for June 9, 2006 – “Cancer Conference”), I had the chance to ask one of the speakers at a cancer conference – a researcher from the University of Pennsylvania Hospital, Dr. Martin Carroll – about the “diffuse mixed large and small cell” grading. I wanted to know whether it in fact belongs to both categories, or whether it’s simply aggressive. He confirmed that it does demonstrate characteristics of both varieties. Does that mean, then, that I have the worst of both worlds, I asked?

You could say that, Dr. Carroll admitted.

If that’s so, then I wonder how the New York Times’ quick answer to the “How long have I got?” question can be applied to my particular case? Let’s see. With the aggressive component of my disease, I have a 65 percent to 75 percent chance of being cured completely. If I’m in the unlucky 25 to 35 percent, though, I’m likely to be gone within two years of diagnosis – which means that (since I was diagnosed a year ago last December), in the worst-case scenario, time’s wingèd chariot is rumbling rapidly onward on in my direction.

Yet, I have (or, at least, had) both types of lymphoma – indolent as well as aggressive. That means the prospect of a permanent cure is unlikely. Even if I’m in the lucky 65 to 75 percent whose aggressive cancer does get cured, I still have to worry about those pesky, indolent cells of mine – the ones that make for a chronic, incurable condition, whose symptoms can be managed pretty well but never turned back completely. The presence of those small, indolent cells would suggest that the answer to the “How long have I got?” question is “10 years, on the average.” (Of course, “average” could mean considerably more than 10.)

The good news is, I was diagnosed early, without having experienced much in the way of symptoms. I’m also on the younger side of the typical lymphoma patient’s profile – both factors which are in my favor. Furthermore, the field of lymphoma research is developing so rapidly that, even within that 10-year window, a whole new drug could be on the market by then – meaning that all bets are off.

Then, there’s the matter of those enlarged lymph nodes – three of them, at least (one of which was biopsied last week). If lymphoma turns out to be the cause (and not some benign, but long-lasting infection), then what type of malignancy is it – indolent, aggressive, or both?

If it’s more on the aggressive side, that could suggest that I fall into the unlucky 25 to 35 percent, and that it’s time to call out the Special Forces (second-line chemo, radioimmunotherapy or stem-cell transplant). If, as the local pathologist thought – back in December of 2005, before the Memorial Sloan-Kettering expert weighed in – the grading turns out to be indolent, then it’s a matter of just whacking the cancer mole back down again, and waiting for the next recurrence.

As for the CHOP chemo treatment I’ve already received (along with the gentler Rituxan), the Times article is blunt about its side-effects: “While effective, it is highly toxic and can damage the heart, so it can only be given a limited number of times.”

As for stem-cell transplants, that treatment is no bed of roses: “When drug treatments have failed, stem-cell transplants are another option. But they are extremely expensive and carry a risk of mortality of 3 percent to 30 percent, depending on whether doctors are using a patient’s own stem cells or transplanting cells from another patient.”

Bottom line? The answer to the “How long have I got?” question is not at all easy to come up with, in my case. There has always been some uncertainty about the grading of my cancer – an uncertainty that may continue, if this most recent needle biopsy turns out to be (like the last one) not such a good sample. Yet, even if the “diffuse mixed large and small cell” verdict does continue to be in place after my most recent test results come in, it’s maddeningly complex, in and of itself (having characteristics of both aggressive and indolent).

Most doctors shy away from giving a clear answer to “How long have I got?” anyway – any answer can be a self-fulfilling prophecy. So, I continue to live with ambiguity, “delicious” or otherwise.

Today's Claire's birthday, and I've got a party to plan. That's enough of ambiguity, for now.