results of today's visit

Sorry for the late post everyone; we didn't get home from the Cleveland Clinic until 6:00, and I've been talking to various people on the phone and typing this lengthy blog entry since then. I can see from the counter at the bottom of my blog that I've had about 40 unique visitors today, so let's get on with it already:

They confirmed it was Hodgkin's Disease, and it wasn't found anywhere else in the body. That also means I won't need the bone marrow test again. HOORAY. The oncologist said, "and apparently your Hodgkin's has been reading the textbook, because it's been doing everything we'd expect Hodgkin's to do, so it will probably continue reading the textbook."

The traditional method of chemo is 4 different drugs, with two administered one week, then the other two administered two weeks later (intravenously), so one month for a full "cycle" of the drugs. It takes about 3 hours per session. But after the 6 months, I'd also need radiation therapy every DAY for 3 weeks. With this method, 85% of Hodgkin's cases are "cured", i.e. the person never has it again. If it doesn't go away after that, they try another round of stronger drugs, but most people don't need the stronger drugs, that's why they use the other ones first.

But the Cleveland Clinic is also taking part in a clinical trial for Stanford University on a method that uses the same drugs, but administered once a week instead of every other week, and in conjunction with some other drugs. Thus, it only takes 3 months instead of 6 (radiation therapy would probably be the same though). There's not much "risk" with the Stanford trial really -- they want 600 people to take part in the trial, and have had about 500 so far. And so far it's been working as well as the traditional chemo method (uses the same drugs, after all), but if it does indeed work as well or better than the traditional method, the advantage is that you only go through chemo for 3 months instead of 6. Also, weeks 1 and 3 are 3-hour sessions (like traditional), but weeks 2 and 4 are only 1-hour. Actually, when you agree to do the trial, there's a 50/50 chance of being in the variable group (Stanford) or the control group (traditional), so even if I consent I may not get the Stanford method.

The doctor said we could get the chemo done anywhere (e.g. Elyria), but he can't tell other doctors what to do. I'll meet with him once a month to check on my progress, and he can recommend things, but he can't actually tell the doctor "do this"... so, we're just going to stick with driving into Cleveland. We're very fortunate to live as close to the Cleveland Clinic as we do, even if it means about an hour of travel there and back.

Also, if I run out of vacation days at work, I'm still protected under the Family and Medical Leave Act of 1993. There's also a Leukemia & Lymphoma Society, which can help out with transportation/parking fees, paying for drugs, and other costs. However, it's based on financial need, so this may not apply to us, since my insurance is pretty good (according to the policy manual, anyway). Still, it's nice to know that such a society exists.

I have to read through and sign (or not sign) the consent form for the clinical trial, then call the nurse who's handling the study to let her know yes or no, then she'll get me scheduled for my first chemo session. People react differently to the drugs; some people lose all their body hair, others just head hair, others just have thinned hair. On the plus side, I probably won't have to shave. :) Another positive: other than the lethargy and driving into Cleveland every other week, this really shouldn't affect my normal routine -- which is what I had heard about other Hodgkin's cases. On the minus side, I will probably be lethargic for several days after each chemo session. And really, typically that's the only negative. Nausea generally isn't a problem, because it can be prevented with drugs. Drugs drugs drugs.