Treatment! - 5/23/12

Yesterday (5/22) at 4:15 I called Beth Israel to get in touch with Dr. Rosen.  While I was still wending my way through the phone labyrinth I got a call from Dr. Rosen.  The additional tests have not revealed anything new to nail down the diagnosis.  The protein electrophoresis still shows a low level of the protein associated with monoclonal gamopathy.  If I have multiple myeloma (MM), I should have a high level of that.  I do have mild anemia, but so do lots of people.  The skeletal survey (the 12 x-rays I took on Friday) should have shown gaps or punched-out areas in various bones if I had MM.  It didn’t, except for one in the skull.  [So I have a hole in the head.  What else is new?]  A possible explanation is a venous lake, whatever that is.  None of the other blood or urine tests showed anything unusual.

The MRI that was taken on Sunday shows fractures of multiple thoracic vertebrae.  The x-ray on 5/14 showed a fracture on T9.  This latest MRI shows fractures of T6, T10, T11, & T12.  That is in addition to 4 fractures of lumbar vertebrae, for a total of 9.  Dr. Rosen has asked for how far up the MRI taken back early in April went, in order to determine if these fractures are recent.  He said something about swelling indicating they are recent, but I wasn’t really listening, as I know the pain has just been in the last couple of weeks.  If my rib cage felt as it does now, I don’t think even I would have gone on the trip to Nepal.

So Dr. Rosen (endocrinologist) spoke with Dr. Levine (hematologist).  Dr. Levine will look for an opportunity to see me before my 5/30 appointment.  Dr. Levine would be the one to do a bone marrow biopsy, the test/procedure that would nail down whether I have MM or just garden variety osteoporosis.  But they agreed that while the test would nail down the diagnosis, it is not an emergency situation to do the test because the initial treatment is the same in either case.  Just the frequency is different.  If you have MM you get the dose monthly.  If you have plain osteoporosis, you get the dose annually.  Dr. Rosen gave the name of the drug(s), and in fact he may have mentioned synonyms of the drug or he may have named several drugs to be taken together.  Neither Barbie nor I got them down, as they were not names we had ever heard before.  It is administered intravenously, and I would have to go into BI to get it, ideally late this week.  Dr. Rosen’s secretary is working on the administrative side of things, as the treatment has to be approved by my insurance companies.  If we are lucky, Dr. Levine could see me when I come in for the treatment.

We continue to be very impressed by Dr. Rosen.  He anticipated many of our questions, and he assured us that he would continue tracking things until the mysteries involved are resolved.  It is equally clear that the doctors at Beth Israel operate as a team.  So I will cancel my appointment with the hematologist at Emerson/Mass General and concentrate the treatment at BI.