Met with Dr. R this afternoon. Things still look OK. I'm still stable -- no real changes.
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I'll be honest: I was prepared for him to say something like, "Maybe we should schedule a scan and see what's going on in there." Not that I had shared that expectation with anyone (except Isabel). It seemed to me that the nodes near my left hip were getting larger; when I bent down to tie my shodes, for example, I felt some different pressure than I'd felt before. Those nodes are fairly close to the surface, fairly easy to feel, and I had convinced myself they were swollen more than usual. So the typical watch-and-waiter worries started up, and I began wondering if maybe I was transforming to something more aggressive, and would need aggressive chemo right away. Or maybe that they weren't all that much more aggressive, but at the point where treatment was necessary, so I'd start on Rituxin. So it goes -- every ache and twinge is magnified.
But, alas, none of that. Dr. R felt around, and didn't detect anything out of the ordinary, in the hip nodes or anywhere else. The blood work is still very good -- all of my counts are within normal range. He was very reassuring about it all.
After the exam, we had our usual Q & A session. I told him I'd been doing some reading in oncology journals lately. He laughed and told me I should be reading about the economy instead. This was part of his being reassuring, actually -- I'm stable enough to have other things to worry about besides the NHL, which is proceding normally (that is, slowly).
But he wasn't blowing me off. We did discuss my questions, which centered around treatment options. I told him about an article I read recently (one that I haven't linked or fully discussed here) that has to do with the idea of Follicular NHL being incurable, and how that perception shapes our approach to treatment. Basically, the article author says that as long we do things like watch and wait, we are admitting that fNHL is incurable. But if we were more aggressive from the start, we'd have a better chance at understanding which treatments result in a cure. Since fNHL affects mostly elderly patients, many of them die of old age before they die of fNHL, so we don't know what actually cures them. So trying for a cure early on with aggressive treatment will allow us to see which treatments really do last long enough to be called curative.
Dr. R understands this aggressive approach, but is more conservative about treatment. Essentially, he thinks there will be time for aggressive treatments when the time comes -- no need to rush them now, especially since I'm still not showing symptoms. It's more or less the conclusion that I'd come to, but I was glad to hear he thought the same thing. I like that he's being conservative, as hard as the watch and wait thing is sometimes.
And this is all so hard sometimes. It's been the same way, to varying degrees, from the start: feeling the need to do something, but feeling happy that I don't have to.
Still, this was a good visit. As my support group friends say, "Stable is a very good word." Dr. R debated with himself about when to do another scan. It's been two months. He decided that, since things look so stable, he'll wait another two months to see me again, and then we'll decide when to schedule another scan.
So I'll keep educating myself and staying informed and ready for when the time comes to make a decision.
Tuesday, September 30, 2008
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Lympho Bob --- Excellent news. Glad to hear things are stable and going well. As you know I have been on a clinical trial of two MAB's and have to say so far so good. I had my midpoint CT scan today, so should have something posted about how effective those treatments have been (I can no longer feel the nodes in my groin and neck, so I am thinking/hoping I am going to get a better than expected outcome). I believe I read, if not the same, a similar article about being aggressive with fNHL. I do know there are now over 100 MABs in development for follicular alone. So hopefully when the time does come for you, the toxicity of chemo wont be necessary. I tell my family and friends all the time, I have a good cancer (a bit of oxymoron) and I am going to be around just as long as they are, just I'll know more about my overall health at all times LOL. Next time you are in ask your doctor about the BiTE (blinatumomab)as well. Would love to hear his opinion. I know when I mentioned it to my Doctor, she perked up with excitement.
Lastly, thank you for the compliment on the new member of the Hall family. I know I am partial and just think he is to die for (as I am certain almost all dad's feel). So far he has been nothing but a Joy and a blessing (other than he still has day and night mixed up).
On another note, we have lined up about 40 walkers for our LLS chapter of Light the Night walk in a few weeks. The lady at our local chapter was somewhat floored that we had so many walkers! Knowing I have that type of support group, definitely is encouraging to battle this until I am a 150 :)
Keep up the battle, try not to worry too much. I can tell you have just as wonderful a family and great support around you and I know how important that is.
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