The Feds Think I'm Disabled

This past week I received from the Social Security Administration notification that it had come to the conclusion that I am indeed disabled, and have been so since June 2009. This will result in monthly payments from the SSA, but the monthly private LTD insurance payments that I have been receiving since October will be reduced by a corresponding amount, so financially speaking, this event is a wash.

The other benefits are somewhat longer-term in nature. The first is that I will become eligible for Medicare coverage in November 2011. That would be several months beyond when my current COBRA coverage would end. But I may be eligible for an extension of that coverage; I must have a little dance around that issue with the company administering the COBRA plan. Of course I hope to return to work before any of these dates matter, but I must make sure that the issue is resolved in advance, in case my hopes do not come to fruition for some reason.

Second, the SSA provides for a "trial work period", lasting nine months, during which my disability status would remain unchanged, and the associated payments would continue as usual, even while I was working. If, before the end of the trial period, I found that I was unable to sustain the effort to work normally, then I would remain with the original disability status. The astonishingly good idea is to allow the disabled person to determine whether or not he is truly capable of leading a normal work life again by actually doing so, without having to completely disavow his disabled status all at once. I'm not sure how the private LTD insurance would work in such a scenario; that is something I will have to research.

Third, if the disabled person continues to work beyond the end of the trial work period, but then is eventually (within five years) forced by his condition to again stop working, he can request "expedited reinstatement", which if granted would cause payments to resume immediately, without having to begin with a new application all over again. This seems tailor-made to fit precisely the circumstances of the typical cancer patient who has achieved a precarious, possibly impermanent remission, whose disease could rise up again at any moment, forcing the patient back into a debilitating regime of rough treatment at the hands of the oncologists. Again it isn't clear how the private LTD insurance would work in this instance.

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Maintenance Therapy

On Wednesday I paid a visit to the Christiana oncologist, who concurred in all substantive respects with the conclusions and recommendations of the Hopkins oncologist. So, beginning immediately, I will once again take Revlimid three weeks out of four, unless and until testing indicates that the disease is not being restrained by the drug. Both oncologists are basing their belief that the transplant was successful primarily on the (not quite total) absence of the protein that typically shows up in the blood of myeloma patients (although in my case that signal was never particularly strong in the first place). The results of the hip bone marrow biopsy are taken as evidence that the disease has not spread, rather than saying much about whether or not it has been rolled back, since the original diagnosis was never based on such a biopsy in the first place. On such seemingly slender threads do I now teeter above the abyss.

It so happened that this week the local chapter of The Leukemia and Lymphoma Society (which also covers myeloma as a related hematological malignancy) sponsored a seminar, held at the University of Pennsylvania, explaining to patients how new treatments for these cancers are developed and approved, including the clinical trial process. So on Friday morning Huong and I traveled to Philadelphia to attend this seminar, the better to prepare ourselves for the possibility that a clinical trial could be in my future. Apparently, in spite of its relative rarity, multiple myeloma receives some pretty intense attention from the research community (the NIH's clinical trial registry has more than a thousand entries for myeloma), probably owing to its relation to the immune system, which is a very hot research topic generally. I came away from this seminar a bit more comfortable with the clinical trial concept, although I can't say that I developed any sort of enthusiasm for it, especially given the possible cost- and travel-related ramifications involved. The health-related risks I'm pretty sure I could handle.

At Last, Some Transplant Results

As you may recall, for the past couple of weeks I have been languishing in a kind of oncological purgatory (or is it a limbo?), waiting to hear what the Hopkins oncologist thinks is happening with the myeloma in the wake of the stem cell transplant. When I didn't hear anything from him for a week after the 60-day followup tests had been done, I sent him a query via e-mail, which resulted in an out-of-office response saying that he had left town, might not be able to respond to e-mail in a timely manner, etc. This was followed by dead silence, until today, when I at last received a nearly ecstatic missive from him, the main points of which are the following:

1. He cannot recall seeing such a good response to a transplant in a myeloma patient. He thinks the tumor is completely cleared. I am not sure what led him to this conclusion, since the tumor itself was not biopsied, so I intend to interrogate him further regarding the evidence and reasoning behind this assertion.

2. His absence was in fact due to his attendance at a conference focused on bone marrow transplants, and amongst the presentations was one describing a recently concluded clinical trial, sponsored by the National Cancer Institute, that tested the efficacy of Revlimid as post-transplant maintenance therapy for multiple myeloma patients. More than 500 patients were randomly plied with either Revlimid or a placebo, over a period of 4-1/2 years. Half the patients getting the placebo started getting worse again within a little more than two years, whereas by the end of the trial, fewer than half of the patients getting Revlimid showed this "disease progression". These results are said to be "highly statistically significant".

3. His prescription, therefore, is that I should go on Revlimid maintenance. Of course this is a decision that must be made in consultation with the Christiana oncologist, and will be a major topic of conversation when I visit the latter next week. My understanding of "maintenance therapy" is that it would continue indefinitely, unless and until significant "disease progression" was detected, at which point presumably measures of some more drastic kind would have to be taken.