Hey Ken!
There have been a number of good conversations on marrowforums about wheatgrass as a chelator.
Here are a couple:
http://forums.marrowforums.org/showthread.php?t=2280
http://forums.marrowforums.org/showthread.php?t=1809
And
this discussion of Exjade gets into wheatgrass and the potential for black tea, calcium, and dairy to slow absorption of iron from food. (Though watch out for the blood thinning effects of tea, given your low platelets.)
Unless you eat beef liver topped with spinach every day, I gather that it would be hard to get enough iron from your diet to even approach what you are getting from your transfusions. Still, lots of folks around here avoid red meat, fortified cereals, and other sources of unneeded iron. And that's probably a good practice.
I've been doing a good bit of reading about iron overload and chelation, because my docs at NIH have recommended I begin using one of the chelating drugs in a couple of months. My ferritin is at just under 2800. We haven't addressed this previously because of the hope that I would respond to Campath, start making my own red blood cells, and gradually use up all that excess iron.
Such has not been the case, so chelation is on the table. The docs want me to wait two months before starting Exjade or Desferal because I've just started Danazol, which has potential liver impacts, and they don't want to add a chelator, with potential liver impacts, on top of that.
I took Wheatgrass early this year for some months, and believe it held down my increase in ferritin. But I stopped when my transfusion need suddenly increased and I decided to eliminate the wheatgrass, just in case it had some effect. It's pretty clear now that wasn't the case, so I started taking
freeze-dried wheatgrass juice capsules a couple of days ago. I also have
wheatgrass powder that I will mix daily into smoothies.
I have also tried
compressed wheatgrass tablets. These are really big pills, but I learned to like the taste and just chewed them up.
What I have not tried is growing my own wheatgrass and juicing it (or buying the
fairly expensive frozen juice), even though the relevant studies on wheatgrass as an iron chelator all seem to rely on fresh juice from very young plants. I'm not in a position to grown my own, and there's plenty of anecdotal evidence on marrowforums from folks who've used one or another of the powders or pills with success.
I am no expert on this, but I think there was a pretty big hysteria about iron overload in the bone marrow failure community about the time that Exjade -- the only oral chelating drug approved in the US -- was approved by the FDA. In fact, if you go read some medical journal articles from 2007 and 2008, you'll find docs writing that their patients are more concerned about iron overload than about their bone marrow failure.
Though Novartis (owner of the chelating drug patents) is spending lots of cash working on establishing the value of chelation, the hard data out there -- aside from thalassemia patients -- on iron overload and chelation is a mile wide and an inch deep. In the absence of data, however, there are lots of very firmly held opinions.
There's a helpful
2008 presentation by Dr. Gail Roboz on the AA&MDS website. I highly recommend viewing that presentation, which is long on common sense.
Her bottom line is that, if you're talking about a younger patient, who is looking at potentially years of transfusions, and there's no guarantee that the current therapy is going to result in transfusion independence, using a chelating drug probably make sense.
That's kind of where I'm at, and why my NIH docs want to start chelating. Since they've given me two months before that cranks up, I plan to pour on the wheatgrass to see if I can move the bubble with something that has fewer side effects than Exjade or Desferal.
I hope that's useful.
Take care!
Greg