I saw Dr. R today. Things still look good. The usual Big Three were evaluated: my bloodwork ("Perfect, as always"), a physical exam ("I don't see or feel anything that impresses [worries] me"), and my self-reported health ("good").
The last time I saw Dr. R, we said we would use today's visit to discuss our next steps. I wanted to consider another 4 rounds of Rituxan. It's not standard practice for patients with Follicular NHL, but it's certainly a possibility. There are a couple of people in my support group who have done it, and it seems to have worked for then. Dr. R has seen plenty of data for following up heavy chemo with Rituxan after 6 months, but there's less out there that shows success in continuing Rituxan 6 months after taking Rituxan.
Back in the early spring, I was pretty certain I was going to fight him to continue the Rituxan.
Today? Meh. I don't have that fight in me.
So he suggested, based on bloodwork and everything else, that we just leave it alone for now. I know that people who take straight Rituxan can go 2 or 3 years before they need anything else. It's been close to 6 months for me.
My logic for wanting to try the Rituxan was (1) I'd rather try it now when I don't really need it so if it doesn't work, I won't waste time using it if I DO need treatment, and (2) summer is a convenient time for treatment for me.
From our conversation, it sounds like he wouldn't recommend Rituxan again anyway. His logic is that if I didn't get a complete response the first time, it probably stopped working, so it's not worth the bother. And in response to my wanting to know now whether it's still working before I need to know, he doesn't think it's worth it to go through all of that time, effort, and possible allergic reaction for nothing.
So we're back to watching and waiting, basically. In the last few weeks, I've felt less of a need to attack it. Maybe it's the heat and my being too busy; maybe I'm just feeling good and not wanting to mess with it.
We talked about the next step. He's still open to CVP, the combination of chemotherapy drugs. But he also called CVP "a little old-fashioned," and said he wanted me to know that he's up on the more recently-used treatments. (I love that I have him on his toes that way.)
He mentioned two possibilities that he hadn't mentioned before.
One is Treanda, also known as Bendamustine. I've written about this before. It's most often talked about in comparison to CHOP, the heavy chemotherapy. Treanda has been around in Europe for a while. It has been shown to be as effective as CHOP, but with less toxicity and causing less potential damage to the heart (a major side effect of CHOP). I think of Treanda as something to be used "down the line."
The other new possibility is Velcade, also known as Bortezomib. I've written about this once or twice before, too. It was originally approved for use with multiple myeloma (a bone marrow cancer) and Mantle Cell Lymphoma (an aggressive type of NHL), but has also been used with other types of NHL, including Follicular. Velcade is not chemotherapy; it's a class of treatment called "proteasome inhibitor," which works by targeting proteasomes, which break down proteins. Velcade may stop certain proteins from being broken down, which in turn causes cell death. Dr. R mentioned one particular side effect of Velcade, peripheral neuropathy, or loss of feeling in the finger tips. But, he said, this usually comes from taking it for months, and I wouldn't likely be on it for that long.
One advantage of Velcade or Treanda would be that, unlike CVP, they are single agents. This is good becuase, if there is a problem, you know what's causing it, and you can stop. With CVP, you have to guess which of the three drugs is causing the issue.
So things are in a holding pattern of sorts, but there's still plenty to think about and plan for. But the important thing is, I feel good, and I have the gift of time to think about where to go from here.
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