Haven't posted since October - I guess because the Cytoxan/Decadron/Rituxan (CDR) treatment is going fairly smoothly, and without any particular incidents. The IgM measurements - the "evil proteins" that are floating around in and thickening my blood - are steadily going down, but not at a particularly astonishing rate. At diagnosis, the number was 3190 milligrams per deciliter; the normal range for an adult is between 40 and 230. At the beginning of the CDR regimen, it had gone up to 3363. They draw blood to test the number at each treatment (every three weeks), and the most recent report was 2146. So it's going in the right direction. I saw that report yesterday, at treatment number 7 of 8, and it was from blood drawn just before treatment 6. So it really shows the effect of treatments 1-5. That's a drop of 32%, and a drop between 25% and 50% is called a "minor response." Hence, I'm responding! If the drop-rate from treatment to treatment continues (about 9% recently), I'll get to the "partial response" range - a > 50% drop overall by the end this regimen.
But that's not the normalcy I'm so happy about. For the first time since diagnosis, I'm officially not anemic! Normal range for hemoglobin is 12 - 18 grams per deciliter, and I hit 12.7 on Monday. Most of the summer and up to the start of treatment I was in the range of 7.5 to 8.5, so this is great news.
I have to keep in mind that this is not a curable disease. After treatment stops, the symptoms will start to recur at some point. There's a decision coming up: whether to continue so-called maintenance treatments of Rituxan, with an infusion every three months. There is some evidence that this increases the time, by as much of a factor of two, until more regular treatments are needed. But there is no evidence that it increases survival time, which is the gold standard for cancer treatments. And some people develop a resistance to Rituxan over time, so when the symptoms do return, Rituxan might not do its job anymore. There are new treatments on the horizon, though. So some of the factors to weigh are: likelihood of developing resistance; the quality of life aspect of going a longer time without treatment; the availability of alternative treatments; and the cost to the healthcare system. On this last point: if treatment isn't a hardship - which it hasn't really been - then perhaps the quality of life aspect is not all that important, and why add stress to the system, since survival time is not increased? Decisions, decisions.
Regarding side-effects: I've had few. I tolerate the Rituxan well. The Cytoxan can cause nausea, but I'd say I've really only experienced queasiness. As reported in the previous post, the anti-nausea pills they gave me were knocking me out, so I've been just dealing with the queasiness. (My son has provided me with an alternative, herbal treatment for nausea, baked into cookies. The herb comes from Northern California. Haven't needed to try them yet.) The most serious side-effect is that I'm pretty wiped out on either Wednesday or Thursday following the Monday treatments, and miss a half-day of work or so. Fortunately, the workload permits this, and everyone at work is very understanding.
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