L and M

As I said in my last post, the Lymphoma and Myeloma Conference took place last weekend, and some of the information about the research that was presented at the conference is starting to trickle out. As I promised, I'll share it when I get it, so today I'm sharing. I'm mostly getting the information from people who were there and took notes, so there aren't really any links to the conference or to research reports just yet. I'm sure they'll be coming out eventually. But in the meantime, you'll have to trust me, just as I'm trusting my sources.

One presentation from the conference looked at levels of mortality in European NHL patients. The incidents of mortality are declining in the countries that were surveyed. They had steadily risen until about 1999, and they've been falling (slowly) ever since. While a cause isn't mentioned, I'm guessing it's because of the widespread use of Rituxin that began at roughly that time. Whatever the reason, that's good news -- treatments are working.

(I should probably remind you about statistics -- they're helpful in comparing treatments, but don't mean much in the big picture. Follicular NHL effects older people, so mortality rates don't necessarily mean that they died of lymphoma. Seearch for my earlier post on this topic if you want more.)

Another presentation (more relevent for me) had to do with when to begin treatment, asking if watching and waiting was still appropriate, given advances in immunochemotherapy (Rituxin + chemo) and RIT (Zevalin and Bexxar -- Rituxin laced with radiation, basically). The expert who led the discussion said that watch and wait still makes sense since some patients never need treatment, their lymphoma waxing and waning, but never causing enough problems to require other treatment. In addition, watching allows the doctor to keep track of the clinical behavior of the lymphoma (is it becoming more aggressive?) which will change the treatment that's required. So this is basically an endorsement of watching and waiting as an acceptable approach.

Another presenter looked at the National Lymphocare study, which surveyed 2,728 lymphoma patients. An interesting little nugget: Watching and waiting is most commonly used in the northeast, less so in other parts of the country. Looking at other data, it seems that there's some correlation between the use of watch and wait in the northeast and the fact that there are so many more cancer centers around here, so patients can more easily get second opinions.

Another bit from the Lymphocare study: the most common first treatment choice for follicular lymphoma is R-CHOP, a fairly aggressive chemotherapy. I didn't get much more on that fact, but it makes me wonder about my doctor (who is recommending a much less aggressive plan for treatment -- R-CHOP would be maybe the third or fourth choice down the road). I'm not disagreeing with what he's recommending; I'm just wondering if his less-aggressive approach is related to the northeastern preference for watching and waiting.

R-CHOP (a combination of Rituxin and four chemotherapy drugs) has also been shown to lessen the chances of transformation (about 30% of follicular NHL patients will have their lymphoma transform to something more aggressive), so there's that consideration. On the other hand, Dr. R's plan is to hold off R-CHOP so that it's available in case there is some transformation, so the benefits will be there anyway.

That's the tough part of staying informed: so darn many choices, and none of them have definitive answers. Still, I'd rather go into a conversation with my doctor with a sense of what he's talking about than just going in blindly and trusting his choices. I still need to trust his choices, but at least I can know enough to ask the questions that will get him to justify those choices.

In the meantime, I'm still feeling OK, and that's what matters.

. This point made by Dr. Leonard. Also based on the National Lymphocare Study, n = 2,728: * Initial observation (w&w / expectant management) is most commonly used in the NorthEast US, less so in other regions of the country. * W&W is more commonly recommended in areas of the country where multiple centers exist - where the patient can more readily get second expert opinions. (hypothesis)* Also, from this study the current trend is to use CHOP-R as first therapy for FL when treatment is indicated.