A mostly good-to-very-good checkup.
Highlights:
* It is FREEZING in Little Rock in January. I never remember that and always pack as though it's going to be in the 60s. Well it was 19 degrees last week and got as low as 30 last night. Chilly!
* I remain in stringent complete remission. No M protein, all markers normal except for IgM which remains low and is recovering post-transplant. More on this below. Most importantly, bone marrow is negative for any minimal residual disease -- the most sensitive test, of course. I believe (though I'll need to check) that makes four random marrow sites over the past 18 months that have tested MRD negative. A good sign, to be sure.
* The pits in my spine have not resolved -- they are unchanged from my previous scan, and number five, all sub 1cm and in the thoracic vertebrae. I am going back on Zometa every other month to see if we can spur resolution. Should that fail, I can likely look forward to fine needle aspirations of as many of them as can be reached with the needle (this was an issue before -- they have to go deep, evidently), and those aspirates subjected to MRD assessment. We shall see.
* Insurance has, for the first time, been a real issue. They rejected all scans. I paid out of pocket for the MRI of the T-spine (ouch, to the tune of $1500). I would have liked to see a PET and other MRIs but for now, no dice.
* I have experienced an uptick in Lambda free light chains -- they are still well within normal ranges but have increased steadily over the past year. BB confirmed that this is likely just a sign of my immune system recovering. Still, as FLCs increase before M protein does, it was one of those "this is probably nothing...BUT..." moments. All that said, negative MRD trumps everything.
* I asked BB a number of questions. Among them: (1) Confirm that I did have cytogenetic abnormalities so that I can read the data to parse for my biology (yes, I did); (2) has my gene array returned to what looks like a patient without any MM whatsoever (work in progress); (3) is there a plateau among TT4 lite (too early to say but numbers do not appear to be plummeting, which I was worried about initially -- and in fact among those with my "subtype" (proliferation) there does appear to be a plateau; (4) should I get any other tests, like a heavy lite assay, to assess my condition or the depth of my remission (no); (5) are the rising LLCs cause for concern (likely just recovering immune system); (6) what should we make of the persistent former lesions in my spine ("why are those f*ckers still here?" he said as he looked at the MRI results...put me back on Zometa every other month, probably fins needle aspiration of remaining lesions in September to test specific marrow from those sites for MRD; (7) what is the plan for recurrence? ("I do not plan on recurrence." me: "That's great, Bart, but I want to plan for recurrence." BB: "We would need to assess your biology at that time and look at whole genome sequencing and other analysis to inform our strategy at that time."
The upshot: steady as she goes, watchful and hopeful waiting, let's see if the Zometa makes those lesions disappear.
Thursday, January 15, 2015
Wednesday, January 7, 2015
Does Do No Harm do harm? Food for thought.
Happy New year. I recently joined an interesting call hosted by the MMRF for a few interested parties, where Dr. Lonial from Emory along with Dr. Daniel Auclairre of the MMRF spoke about the highlights from the ASH conference and took a few questions (some of which were from me).
One thing that struck me in hearing all these trials -- and in the philosophy of Dr. Lonial, who is quite an excellent doctor -- is that our entire medical system remains rooted in the concept of "First do no harm." Incidentally, I was going to make a wisecrack about Hippocrates but it turns out this phrase originated not with the Hippocratic oath but with 19th century surgeon Thomas Inman. Thank you, Wikipedia!
Anyhow, back to Myeloma.
A significant result of the "first do no harm" approach is that if you know treatment X is going to have more side effects than treatment Y, and you don't yet know if treatment X is going to be better than treatment Y, one is disinclined to pursue treatment X. If you consider that the life-expectancy of a newly diagnosed patient is now 5+ years, that means that if we started today with a test of a lower side-effect therapy versus a higher side-effect therapy (Total Therapy qualifies, certainly) it would take much longer than 5 years before we knew enough to decide between the two types of treatments. Conservatism will err on the the side of the treatment with fewer side effects.
This explains a lot, including the approach that Mayo and other conservative centers take with respect to treating the disease.
Interesting, at UAMS, this is turned somewhat on its head. BB and Dr. GT, formerly at UAMS and then Huntsman and now in Iowa, have both told me on separate occasions that because they fervently believe that they approach cures a meaningful portion of patients while less aggressive approaches (to "standard risk" newly diagnosed disease) to not, that it would be a violation of medical ethics to put people into a trial that didn't offer then the same chance at a cure. That "doing no harm" (in terms of not introducing side effects or any treatment related mortality whatsoever) in fact *does* do harm in the long run.
When you combine these two issues -- conservative centers that don't want to risk greater side effects with aggressive centers that believe it would be unethical to randomize into less effective trials -- it points out how challenging it will be to ever get a head-to-head trial to compare Total Therapy with something less aggressive. And even if such a trial could be put together, it would take many years before results were known.
In other words: there will probably be a clear and definitive cure before there is a clear and definitive universal point of view on Total Therapy. And until that time, patients will be required to do their own research, form their own opinion, and select a doctor whose philosophy and approach is compatible with their own belief set, comfort level, risk/reward preferences and other decision-making factors.
Some food for thought.
One thing that struck me in hearing all these trials -- and in the philosophy of Dr. Lonial, who is quite an excellent doctor -- is that our entire medical system remains rooted in the concept of "First do no harm." Incidentally, I was going to make a wisecrack about Hippocrates but it turns out this phrase originated not with the Hippocratic oath but with 19th century surgeon Thomas Inman. Thank you, Wikipedia!
Anyhow, back to Myeloma.
A significant result of the "first do no harm" approach is that if you know treatment X is going to have more side effects than treatment Y, and you don't yet know if treatment X is going to be better than treatment Y, one is disinclined to pursue treatment X. If you consider that the life-expectancy of a newly diagnosed patient is now 5+ years, that means that if we started today with a test of a lower side-effect therapy versus a higher side-effect therapy (Total Therapy qualifies, certainly) it would take much longer than 5 years before we knew enough to decide between the two types of treatments. Conservatism will err on the the side of the treatment with fewer side effects.
This explains a lot, including the approach that Mayo and other conservative centers take with respect to treating the disease.
Interesting, at UAMS, this is turned somewhat on its head. BB and Dr. GT, formerly at UAMS and then Huntsman and now in Iowa, have both told me on separate occasions that because they fervently believe that they approach cures a meaningful portion of patients while less aggressive approaches (to "standard risk" newly diagnosed disease) to not, that it would be a violation of medical ethics to put people into a trial that didn't offer then the same chance at a cure. That "doing no harm" (in terms of not introducing side effects or any treatment related mortality whatsoever) in fact *does* do harm in the long run.
When you combine these two issues -- conservative centers that don't want to risk greater side effects with aggressive centers that believe it would be unethical to randomize into less effective trials -- it points out how challenging it will be to ever get a head-to-head trial to compare Total Therapy with something less aggressive. And even if such a trial could be put together, it would take many years before results were known.
In other words: there will probably be a clear and definitive cure before there is a clear and definitive universal point of view on Total Therapy. And until that time, patients will be required to do their own research, form their own opinion, and select a doctor whose philosophy and approach is compatible with their own belief set, comfort level, risk/reward preferences and other decision-making factors.
Some food for thought.
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