Going Forward
At long last we've gotten through 2009, a fairly miserable year for so many people that I hope we never see its equal. On the whole I feel I got through it with few scrapes, and I know I'm lucky.
We were in Cleveland for evaluations on December 30, and I'm stable still, so we are moving forward with Cycle 7 of the clinical trial. The worst side effect continues to be fatigue - I'm tempted to say "the only side effect" but I don't know that for certain. I do know that this drug seems to be tolerated well by participants, from the scanty reports I've heard. The company was able to get the full complement of trial patients for the study. That's a pretty good mark on its own; many trials run into trouble amassing the target study group, whether that's due to stringent prerequisites for participation, or adverse reactions leading to patient dropouts.
During December I started having pain between my right scapula and my spine - nothing drastic, but a fairly constant dull ache. The pain felt very much like pressure on a nerve, similar to what I'd experienced in 2004 while recovering from my liver resection. At that time I developed an abscess that extended from my liver to mid-back behind the right lung, and I was in constant pain from it. Only after we discovered and drained the abscess did I get relief.
For this round I jokingly suggested that it might be my cooking habits - maybe I was straining a muscle while chopping vegetables? I asked Dr. G to review my November C/T scans with me prior to my second treatment in the cycle; even though I'd joked about my cooking habits I had in fact altered my kitchen setup, but there was no change in the pain or its location. We moved through frame by frame and discovered that the tumor in my right lung is now pressing against one of my ribs, and that appears to be the cause of my discomfort.
So what does that mean? I feel better knowing what the problem is, and we're in no hurry to take me off the trial - Dr. G still refers to it as my "body vacation" from other treatments. We may reassess my pain medication, though for now my regular routine is enough to keep it at bay. We may look more closely down the road at some type of Gamma knife or Novalis procedure.
We continue to have options, even beyond available therapies. I'm so very glad to have such good teams to work with.
We were in Cleveland for evaluations on December 30, and I'm stable still, so we are moving forward with Cycle 7 of the clinical trial. The worst side effect continues to be fatigue - I'm tempted to say "the only side effect" but I don't know that for certain. I do know that this drug seems to be tolerated well by participants, from the scanty reports I've heard. The company was able to get the full complement of trial patients for the study. That's a pretty good mark on its own; many trials run into trouble amassing the target study group, whether that's due to stringent prerequisites for participation, or adverse reactions leading to patient dropouts.
During December I started having pain between my right scapula and my spine - nothing drastic, but a fairly constant dull ache. The pain felt very much like pressure on a nerve, similar to what I'd experienced in 2004 while recovering from my liver resection. At that time I developed an abscess that extended from my liver to mid-back behind the right lung, and I was in constant pain from it. Only after we discovered and drained the abscess did I get relief.
For this round I jokingly suggested that it might be my cooking habits - maybe I was straining a muscle while chopping vegetables? I asked Dr. G to review my November C/T scans with me prior to my second treatment in the cycle; even though I'd joked about my cooking habits I had in fact altered my kitchen setup, but there was no change in the pain or its location. We moved through frame by frame and discovered that the tumor in my right lung is now pressing against one of my ribs, and that appears to be the cause of my discomfort.
So what does that mean? I feel better knowing what the problem is, and we're in no hurry to take me off the trial - Dr. G still refers to it as my "body vacation" from other treatments. We may reassess my pain medication, though for now my regular routine is enough to keep it at bay. We may look more closely down the road at some type of Gamma knife or Novalis procedure.
We continue to have options, even beyond available therapies. I'm so very glad to have such good teams to work with.
Labels: appointment results, clinical trial, medications, side effects
posted by rcclive at
9:34 PM
2 Comments:
can't help it but I worry about these lung tumors. Wasn't switching drugs partly to attack them more and this seems like less. WHile I am thrilled you are mostly nasty side effect free, I am concerned. BTW, Betty's priest (also has RCC) is complaining of chronic fatigue but I have no idea what meds he's on.
By
Swanknitter, at 5:40 PM
Actually the switch came because Nexavar stopped being effective, and I fit the profile for the clinical trial and decided to pursue it. There are in fact other drugs approved for RCC that are "good" for lung involvement, just as Nexavar is recognized now for working best against liver involvement. I have those in reserve; I wanted most to be involved in the trial.
By
rcclive, at 7:40 AM
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