Had a very productive appointment with Dr. SF at City of Hope. At the end of the appointment, I explained my frustration with the administrative screwups and was put mostly at ease by SF, who indicated that there are ways to cut through the red tape that he'll help me with, and that once I'm in-patient the quality of the care is second to none. I am hopeful that I'll be able to see the effectiveness of the former concept before having to test out the latter.
At any rate, today's meeting was interesting for a number of reasons:
* My monoclonal spike increased from 4 mg/DL on Nov. 11th to 5.8 mg/DL on Nov. 26th. That's not terrific. If it continues at that pace, I may not have until May to begin treatment, which would be unfortunate for both personal and professional reasons.
* Dr. BB's results (again I almost typed out his name) are "impossible to ignore," in the eyes of SF. SF and others are recommending that a national trial be done using this protocol on newly-diagnosed patients and City of Hope is one of the centers that will be participating. He believes this trial would be set up in three to four months -- unfortunately not of much use if I have to do something before May. Here's hoping that protein spike has leveled off or even fallen when they get the results of today's bloodwork back next week.
* We went through BB's protocol in detail, and while it is aggressive and intensive, there are positives. For example, the length of the high-dose dexamehasone treatment is only four days. There are likewise only four days of the PACE chemo agents (although they do have all the bad side-effects, I can be treated for nausea, etc.) and they aren't the megadoses like the Melphalan will be. I will likely be hospitalized for this week of treatment.
* Since I'll have a catheter for the chemo, they can use this to harvest the stem cells. That is a minor victory but it does mean I won't need to have both arms plugged into a machine unable to move. I'll be plugged in but can play a videogame, read a book, type on a computer, etc.
* They can do the entire treatment in the Los Angeles area.
* The popping sound I heard in my back is likely a ligament rolling over a bone and while the back and rib pain is related to the myeloma, until such time as things start showing up in X-Rays, there's no need to go on biphosphonates at this time. At the end of January, we'll have a new batch of X-Rays and we can review that decision.
* My brothers will be HLA-typed for an eventual allogeneic transplant if need be.
* It's safe to take Lipitor, and both curcumin (which he said is being studied) and neutraceuticals (which he said have no clinical trials to speak of) could cause unpredictable results from the battery of medications I'll be on during treatment, so he recommended I go back on the Lipitor and lay off the alternative treatments. Fine with me...as I indicated I'm a big western medicine guy.
In short, this discussion went a long way to moving away from the "BB is two sandwiches short of a picnic" type concern that I started out with at my initial appointment. We discussed some of the nuances in the medications (e.g. thalidomide vs. revlimid, etc.) and some of the reasons that people might not buy into BB's protocol (which boil down to one might be able to get the same results with a less toxic regimen, but we don't know yet).
All in all, with the exception of the rising protein level, it was a very good meeting. I had already been moving towards BB's protocol and now there may be an opportunity to do that with a local doctor that I've come to know and like, which saves the logistic issues of monthly visits to Arkansas for the next three years, plus three months of intensive treatment there.
I'll still be visiting BB in late January, assuming the protein level hasn't risen so dramatically as to require treatment even sooner. I'll have a battery of tests done by BB, which SF will review when he and I next meet on February 3rd. If the levels remain manageable, then I will have bought another month during which I can visit SJ in New York, etc. Then I'll meet again with SF monthly until we're ready to go. I have stuff to do through April so hopefully this can be put off until May. We shall see.
More to come as events merit / I think of it.
Friday, January 2, 2009
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