[Greg H]

So, where do we go from here?

I was already inclined, based on my conversation with Dr. Matt Olnes and the other folks at NIH during my six-month follow-up, to continue waiting for my marrow to recover, post-Campath, rather than moving to some other therapy.

After getting my detailed bone marrow results, my inclination hasn't changed. There's no dramatic change, so I see no reason to jump ship now. Everything I've read on marrowforums from folks with MDS or AA who've had immunosuppression says it takes a while for the marrow to heal; I'm going to give mine some time to heal.

Besides, there are some positive signs. Between diagnosis, in March 2010, and beginning the Campath trial, in November my platelets slid from the high 90s to the high 60s. The trend was pretty persistent, and not in a positive direction. My last two CBCs have pegged my platelets over 100. My white blood cell and neutrophils counts had undergone a similar slide. The Campath kicked a hole in my WBC and neutrophil counts, of course, but they continue to improve, and the neutrophils have nearly reached pre-Campath levels.
So, it's not like, from my perspective, there's been no improvement here. Things were headed in the wrong direction; now some things seem headed in the right direction.

The exception, of course, is my need for red blood cell transfusions. I was being transfused every six weeks before Campath; I'm still getting RBCs every four weeks now.

So, while I'm waiting around for things to improve, I'm going to start working a little harder on finding out what I can do to help out the RBC factory in my marrow. Here are some thoughts:

IRON - doesn't seem to be a problem. If anything, I've got too much of that, based on my monthly transfusions, and the BMB showed "increased" iron stores in my marrow. I'm continuing the wheatgrass to try to chelate some iron without resorting to the expensive pharmaceutical alternative Exjade. Neither Principal Investigator Matt Olnes nor my local hematologist have recommended chelation at this point, based on the available research on its value for MDS patients. I know a lot of folks on marrowforums are on Exjade or other chelators; I'd be interested in understanding why.

COPPER - My copper was marginally normal (71) when I was diagnosed. I've been taking 6mg of chelated copper every day for 15 months, and my copper has been as low as 46 and as high as 70. It was 66 at last check. Clearly, I'm not making progress. The nutritionist at Wake Forest provided information that suggested oral copper should be taken with zinc to aid absorption. But, back in November, the docs at NIH had me continue the copper while dropping the zinc, probably relying on research that shows too much zinc can result in a copper deficiency. Dr. Olnes reiterated that advice the other day, concerned that too much zinc could hurt copper absorption and doubtful that a smaller dose would help it. Both he and my local hematologist suggested upping my oral dose to 9 mg per day. I think I am going to find a good no-iron multivitamin that has an mg or two of copper and maybe 15 mg of zinc and take that to increase both copper and zinc. I'm not currently taken a multivitamin (never have).

EPO - I had my EPO levels checked early on, and it was way over the level that makes an ESA a reasonable option. I'm not sure if EPO levels change over time, but it seems like a reasonable question to ask my local hematologist, to see if a retest is reasonable. ESAs are not part of the Campath protocol, so, even if my EPO made an ESA an option, I wouldn't make a move in that direction until November. But, still, I'd like to know.

SUGGESTIONS? - I'm interested in figuring out whatever else I can do to help out my red blood cell factory. B12 was 466 a year ago; 1016 in October. Folate is way above the low end of normal. I'm taking both. I'd be interested in any thoughts you all have.

Take care!

Greg