Conference and Trials

At last -- my laptop is fixed. Wireless is working OK, printer drivers are downloaded and functional. Amazing what a week of limited technology will do for you. (What it might do is make you appreciate living a non-technological life, understanding how bad it is for you to be so reliant on computers for your work, communication, and entertainment. Unfvortunately, it didn't work that way for me, and I have little appreciation for that non-tech life. I'm glad to have my computer back. So glad I'm going to spend the next half hour on YouTube watching videos of babies laughing. Just because I can.)

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OK, I'm back. I love laughing baby videos. Like this one.

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This past weekend, the Lymphoma and Myeloma Conference took place in New York City. It was attended by one of the support group members named Karl, whose wife has follicular NHL, and who works as a medical writer, so he's an excellent source of information for us. (He founded and runs a site called Lymphomation.org; if you're ever looking for a great beginning source of information about lymphoma, that's is the place to start.)

Karl gave us a quick overview this morning of the conference. Apparently, there were presentations from researchers on a number of very promising lymphoma treatments, but they are still in the early stages of clinical trials. According to Karl, the number of lymphoma patients willing to be a part of clinical trials is very small, which has always been part of what has held back lymphoma research. The FDA needs evidence that tretaments are both effective and safe, and a small trial of 10 or 20 patients usually isn't enough for them to give an OK.

I've talked to Dr. R about my willingness to participate in a trial, and he's fine with that. There's a great, fairly new website sponsored by the Leukemia and Lymphoma Society called TrialCheck that makes it much easier to search for available trials; you used to need to go to a government site and sift through the trials one by one. You enter information about yourself, your disease, and where you live, and it gives you a list of current trials, with the travel distance for each one.

My joining a clinical trial is kind of restricted by a couple of things. First, while Yale (10 minutes away) has researchers that study Lymphoma, they specialize in stem cell transplants, which isn't something I'll likely need to deal with for a long time. So participating in a trial that's so convenient will probably not happen. There's Dana-Farber in Boston, and Sloan-Kettering in NYC, but at the moment there's really nothing promising there.

And that's the other problem: there are very few trials for people with fNHL who have not yet been treated. I think it's because the expectation is that the first treatment will be followed up with at least one more, so the focus is on making the second and third treatments really count.

If you're thinking that a clinical trial is a bad thing -- it's not. I know I always get the impression that a treatment in trial is something "experimental," and that always has for me the implication that things are desperate -- that conventional treatments arenb't working. But it's not really like that. Any trials I would be in would be phase III, with a reasonable chance of safety and success.

Clinical trials are conducted in three phases. A phase I trial is meant only to measure side effects and safety. (If you've ever seen ads in the back of alternative newspapers promising $500 for participating in research, it's probably a phase I trial -- the participants don't have to have lymphoma, they just have to be willing to "explore the unknown" and risk whatever side effects are possible.) Phase II trials are very small, and the participants have lymphoma. Phase II trials give researchers a sense of whether or not the treatment will work. Phase III are the biggies, with lots of participants -- enough to show that the treatment, and not something random, is the cause of the improvement.

Phase III trials are usually conducted as dual-arm studies, which means they are comparing the new treatment to one that is already known. So they'll take, say, 100 patients and give 50 the new treatment, and the other 50 something like Rituxin, and then they'll compare the success of the two groups. So the second group isn't going untreated or given a placebo -- that would be unethical.

Anyway, I look at TrialCheck every now and then to see if there's something interesting close by. I'm mostly happy to watch and wait, but every now and then I get antsy, and I think I'd rather do something than nothing. I feel a very strong connection to the lymphoma community, and if participating in a trial would help some of the thousands of people with lymphoma, that's just a bonus.

I'm sure that there will be some publicity in the next few weeks about some of the presentations at the Lymphoma and Myeloma Conference. I'll pass along those that seem interesting.