[cathybee1]

So...the last couple of days we have been focused on bmb's, liver biopsies and MRI's.

It turns out that we are in fact going to have to drive over 300 miles so Bruce can have a bone marrow biopsy with IV sedatives. I was pretty astounded that propofol is a ho hum for a colonoscopy, but according to our hematology office (the only one around), a bmb is always (underline always) done in office, and they are unable to set it up any other way.

So, after this sunk in, I started making phone calls; the University hospital in Portland, Oregon was very responsive, and scheduled Bruce to have it done next week. While we were setting this up, I asked if the liver biopsy could be done there as well. The hospital was obliging about performing it, but the hematologist balked, and wouldn't send an order. That made Bruce very crazy, 2 weeks ago, the hematologist not only wanted it done but wanted it done locally in a doctor's office. Bruce arrived home too late to do anything but fume, but the upshot was that after dinner Bruce and I watched a video on You Tube about liver biopsies, Bruce decided it was too risky, and today Bruce and the hematologist talked again. Besides the normal risks of a bleed (not statistically high but very very serious if they occur), Bruce is currently 5 months post coronary stent and on Plavix. Bruce would need to discontinue the Plavix for at least a week prior to the BMB, and the cardiologist has not yet weighed in. Bruce's main question to the hematologist was whether any different treatment outcome was likely following a liver biopsy. The hematologist said no, there were risks, reduced platelets since taking Plavix are a concern, but it would be good information to have, and it could still be done locally. They both agreed delay was good at least for the near term. I was glad I was taking the dog for a walk while this discussion went on. But I was very relieved Bruce was going to put it off, at least until we can get a copy of the MRI report to read ourselves.

Bergit, you are right, it is a given that transfusions lead to iron being stored in the liver. The MRI was supposed to be a non-invasive way to determine whether the liver had been damaged. The MRI did in fact show iron in the liver. But according to the doctors, the MRI is not sophisticated enough to show how much damage has occurred. And MRI's are very expensive here, even with insurance. So they are not routinely used for screening, because if serious damage is suspected, liver biopsies are the "gold standard."

The hematologist would have liked Bruce to start Exjade as soon as his ferritin hit 1000 early this year, but as you have already discussed, ferritin numbers are not always accurate. Exjade carries its own chance of gastrointestinal and renal side effects, and apparently chelates copper and zinc to some degree as well as iron.

So...next step is another bone marrow biopsy to see if there are more definitive signs of MDS this year than last. Do another consultation with a MDS Specialist and Liver Specialist. And see if anything changes now that copper and zinc levels are finally normalizing. Then go from there.