Fourth and last booster/maintenance infusion yesterday with no untoward effects. Still with the slightly enhanced neuropathy but that can be dealt with. Regular port flushing set up every six weeks between now and September and the third of the four maintenance series starts then the first Wed. Until then we optimistically expect to get the start of a good summer tan in Key West next week and see an area of the country we have not seen before.
I'll probably be a bit more irregular with this blog during the forthcoming months since, I hope, I have little of significance to report except continued improvement in my health.
Later....
Thursday, February 28, 2013
Friday, February 22, 2013
the game is afoot
Right. An uneventful 3rd infusion of this series yesterday. Appetite unimpaired thereafter requiring a pork chimichanga to satisfy. Really no other happenings, which is good. Got a hematoma (blood blister) on my right hand and didn't know where it came from. Ah, old age. I was disabused that it was anything cancerous which, unsurprisingly, was one's first thought. ABJ said it should be gone by next week, and already today it is receding. How quick we are to make erroneous associations and to attribute causality thereto.
What game is afoot? A little time in the sun in Key West, FL. We'll see how the sequestration nonsense nationally affects our travel plans which have been made. Our local environment is still monochromatic, that is, mostly white with a little brown, with more white on the way this weekend. Enough.
What game is afoot? A little time in the sun in Key West, FL. We'll see how the sequestration nonsense nationally affects our travel plans which have been made. Our local environment is still monochromatic, that is, mostly white with a little brown, with more white on the way this weekend. Enough.
Wednesday, February 13, 2013
good news
Time today for my second maintenance/booster session, and all went quite as usual. In fact, they must have dripped me a little faster than last week since I am finished nearly an hour earlier. Again the benadryl doesn't quite knock me out, though one of the nurses jokes about "nighty-night" as that drip starts.
I have noted an upsurge in what I perceive to be my neuropathy symptoms, i.e., more tingling pain in my feet, especially my right which had improved these past few months a great deal; more tingling in my fingertips and a greater perception of hot water; leg/shin cramps for several nights; one practice session on my trumpet where my lips tired all of a sudden. I wondered about that, then further wondered what the mechanism might be. It occurred to me that the retuxin should not have any such direct effect since its effects would be gradual and chronic. My first symptoms this past week seemed to occur within hours of my first infusion. It slowly dawned on me--how long have I been absent from my profession?--that what I might be experiencing were associative effects, conditioned effects, as it were, due to my prior history with this mono-clonal-antibody. I asked ABJ today about whether rituxin administration is mentioned as producing such effects. His answer: Yes! Case closed. The symptoms have not really persisted, though I detect, I think, a slightly higher level of neuropathy than before this series began. Several of the effects have not persisted: e.g., leg cramps and embouchure failure.
Now the good news: My CT scan of Monday last is as clean as a whistle. No adrenergic involvement. Of course, the other old age crap is still there: I have some calcification in my arteries, etc. but am otherwise healthy. This calls for vacation planning!
I have noted an upsurge in what I perceive to be my neuropathy symptoms, i.e., more tingling pain in my feet, especially my right which had improved these past few months a great deal; more tingling in my fingertips and a greater perception of hot water; leg/shin cramps for several nights; one practice session on my trumpet where my lips tired all of a sudden. I wondered about that, then further wondered what the mechanism might be. It occurred to me that the retuxin should not have any such direct effect since its effects would be gradual and chronic. My first symptoms this past week seemed to occur within hours of my first infusion. It slowly dawned on me--how long have I been absent from my profession?--that what I might be experiencing were associative effects, conditioned effects, as it were, due to my prior history with this mono-clonal-antibody. I asked ABJ today about whether rituxin administration is mentioned as producing such effects. His answer: Yes! Case closed. The symptoms have not really persisted, though I detect, I think, a slightly higher level of neuropathy than before this series began. Several of the effects have not persisted: e.g., leg cramps and embouchure failure.
Now the good news: My CT scan of Monday last is as clean as a whistle. No adrenergic involvement. Of course, the other old age crap is still there: I have some calcification in my arteries, etc. but am otherwise healthy. This calls for vacation planning!
Wednesday, February 6, 2013
....a bag of Benadryl and thee...
Well, first day back for my second booster/maintenance series. It's like old home week: the nurses are all familiar and smiley, the place looks and smells the same, but something seems a little off kilter. I can't put my finger on it. Then it occurs to me that I recognize no one from my prior experience. The patients are all new to me. As a group, they look mostly hopeful, though there are several in the room who are there because they have either just received bad news, or they have found out that the bad news has returned. But it is significant in an awful way that this is a different cohort.
ABJ reviews my case with me as he makes his rounds through the infusion room. I am sussing out what makes him so good. He has time in his rounds to repair to his office to bone up on the next several patients whom he will interview. He remembers that he saw me fronting the quartet at Le Nonne a few weeks back. It is another cue for his prodigious memory that takes me beyond the fisherman I was formerly. Of course, we also review fishing and I repeat the old joke that I no longer do "hard water", but only fish when it is nice and warm and I can be cozy in my boat, rather than listening to the ice crack under my boots and worrying about falling through.
I always ask him to review his other Mantle Cell patients as a touchstone for myself. In doing so, he shares with me his pleasure in the current outcomes of his two, both of whom have exceeded expectations. The expectations in his mind: 3-4 years. (I do recall this was an outcome of the Cornell protocol which he and I reviewed prior to my initial treatment.) It does make things finite. One guy (?) stayed on velcaid weekly for a number of years with no return of his MCL. They are now waiting with no further treatment in that case. A second appears to have undergone an autologous stem cell transplant after his MCL returned and is doing fine. I didn't get a timeline on that one.
The procedure today was delayed only fractionally in that the nurses couldn't get blood to flow back out of the port so I received an extra bag of saline to start. Eventually they prevailed and it was onto the Benadryl--which almost but not quite put me out, per usual. This was followed by the big bag of retuxin. Jan brought me a sandwich and the last bag tapped out at virtually the same time that we finished the sandwich. Total elapsed time: 4.5 hrs.
It has been one year since pictures so I am scheduled for a followup CT scan next Monday of chest, abdomen, etc. They were out of barium milkshakes so I need to go in tomorrow to pick up a couple bottles. A mid-morning scan time means that I prep upon getting up.
ABJ also reminded me that I am now 18 mos out from diagnosis, i.e., August 2011.
ABJ reviews my case with me as he makes his rounds through the infusion room. I am sussing out what makes him so good. He has time in his rounds to repair to his office to bone up on the next several patients whom he will interview. He remembers that he saw me fronting the quartet at Le Nonne a few weeks back. It is another cue for his prodigious memory that takes me beyond the fisherman I was formerly. Of course, we also review fishing and I repeat the old joke that I no longer do "hard water", but only fish when it is nice and warm and I can be cozy in my boat, rather than listening to the ice crack under my boots and worrying about falling through.
I always ask him to review his other Mantle Cell patients as a touchstone for myself. In doing so, he shares with me his pleasure in the current outcomes of his two, both of whom have exceeded expectations. The expectations in his mind: 3-4 years. (I do recall this was an outcome of the Cornell protocol which he and I reviewed prior to my initial treatment.) It does make things finite. One guy (?) stayed on velcaid weekly for a number of years with no return of his MCL. They are now waiting with no further treatment in that case. A second appears to have undergone an autologous stem cell transplant after his MCL returned and is doing fine. I didn't get a timeline on that one.
The procedure today was delayed only fractionally in that the nurses couldn't get blood to flow back out of the port so I received an extra bag of saline to start. Eventually they prevailed and it was onto the Benadryl--which almost but not quite put me out, per usual. This was followed by the big bag of retuxin. Jan brought me a sandwich and the last bag tapped out at virtually the same time that we finished the sandwich. Total elapsed time: 4.5 hrs.
It has been one year since pictures so I am scheduled for a followup CT scan next Monday of chest, abdomen, etc. They were out of barium milkshakes so I need to go in tomorrow to pick up a couple bottles. A mid-morning scan time means that I prep upon getting up.
ABJ also reminded me that I am now 18 mos out from diagnosis, i.e., August 2011.
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