Friday, December 26, 2008

Research and a visit with Dr. ML

Over the following several days, I did some of my own reading and research, and asked PinnacleCare to do the same. They pulled together statistics on transplant successes at various hospitals, confirming for me that allogeneic transplants were too dangerous at this time. They began pulling together information on clinical trials. We discussed scheduling several visits out of state, given that I was leaning towards New York, Boston, Houston, Little Rock, and Rochester, MN. I had to consider how I was going to route all of this and contend with the needs of my job.

I had, unfortunately, not had the foresight to sign up for long-term disability insurance so my time out of office for this disease would be limited to six months. Here's hoping that won't be an issue. When I get this into remission, I'll be able to sign up for LTD insurance.

I began to refine the list of questions I was going to ask the doctors with whom I met. These now revolved around what kind of up-front therapy would be best, and what the harm in a "kitchen sink" approach would be, benefits of different types of transplants, some details around side-effects and what I'd be going through, etc.

The first doctor that I saw with this new list of questions was Dr. ML. I'd be told by one friend of a friend that he was part of an inner circle at a given hospital and that those doctors were "in the know" and others affiliated with that hospital but not in that group weren't as up-to-date. This conflicted with what another person had told me about these doctors.

At any rate, I went in with an open mind. But my meeting with ML was very disheartening. His resident first advised that I go on something immediately to prevent spinal compression, which is a particularly nasty thing that can happen where the myeloma eats up vertebrae and causes the spine to collapse like an accordion. Dr. ML advised that depending on which of the two staging systems for the disease was considered, I was actually Stage 2, not Stage 1. He said that were I in his care, he would start treatment immediately. I didn't want to hear either of these things.

Dr. ML didn't seem as up on combination therapy as some of the other doctors, and this was on the heels of a huge hematology conference that was happening. He suggested that the convenience of not being near a doctor's office was a factor in determine whether or not to use Velcade. I suppose that's true to an extent, but it also indicates that he either is (a) not confident in the superiority of a regime that includes Velcade, or (b) isn't aware of the trials that demonstrate same. In any case, I learned a few other key things from him:

* Myeloma can develop resistance to Velcade, but a new form of Velcade will come out that will work, so there's no harm in throwing the kitchen sink.

* Early transplant (meaning right after induction) has been shown to be more effective than late transplant (after symptoms recur) in prolonging life expectancy.

* Part of the reason that transplants can't be done every few years is that the use of some of these drugs inhibits the ability to harvest stem cells. I asked why not harvest for multiple transplants now, and he indicated that storage space was a factor. Hmm. Or, rather, hrumph.

* I was told it was a challenging goal to be alive to see Parker's wedding. That wasn't something I wanted to certainly wasn't on the optimistic end of the spectrum.

* Since it was going so well, I decided to ask how one dies from this. I had assumed it would be total renal failure, but instead I was told that it would be an infection that I wouldn't be able to get rid of. Presumably that would mean escalating fever until I slipped into a coma and that would be that. Doesn't sound great but it sounds better than total organ necrosis, or falling feet-first into a mechanical threshing machine.

That night was a very hard night for both Jill and me.


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