Marlene,
Thank you for the kind message and for all your experienced information about how ferritin reacts and your husband's iron chelation treatment. I had no idea about how blood ferritin can be a sign of inflammation.
My mom did decide to start taking the Exjade, so we will see how she feels and what happens with her blood lines.
Also,
I found an article that mentions improved hematopoiesis with relief of iron burden, so maybe it will even out? Fingers crossed?
On Monday my mother's Hgb was 7.6 and platelets 17. She got both blood and platelets, so... slightly less than 4 weeks between blood transfusions, and still holding about 10/11 days between platelet transfusions. If it was my body, I might have asked to hold off on platelets for another day or two to see how much it would continue to dip to get a better idea if there is any "baseline" or if it would just return to zero. I can absolutely understand not wanting to play around with that though, as my mother starts getting more frequent nosebleeds/bruises/broken blood vessels when the platelets dip below 20.
One thing I had wondered is if there
has been improvement in hematopoiesis, but that it's hard to notice due to still being under the transfusion threshold they set. If my mother's bone marrow was only able to keep up production enough to make a Hgb of 4.6 before any treatment, maybe it has improved to produce enough for a Hgb of, say, 6.8, but you wouldn't be able to see it yet because they will transfuse blood below 8.
I'm hoping also that the markers of Polychromasia, nucleated red blood cells, ovalocytes, etc, are a sign that the marrow is trying it's hardest to pump out as much as it can right now, even if the "factory" is releasing products early, so to speak.
Matthew,
I am thinking of you and your mother often as we seem to be in the same boat on a lot of things. I'm really glad that your mother's hematologist offers up so much information to you and explains so many things thoroughly without giving false hopes or false doom. I'm also really happy you share that information here since my mother's hematologist is a lot harder to squeeze this kind of information out of.
Needing more time to respond definitely makes sense for anyone who is older. There is already less marrow cellularity due to age anyway.
My mother's neutrophils are still holding really well, even with the reductions in prednisone. They've fluctuated between 1.9 to 2.4. That's nearly normal levels, according to this lab's range! The hematologist did also reduce the cyclosporine down to 100mg x2 a day and the prednisone will be further dropped to 10mg. I think he finally
saw the side effects my mother was having. I am hoping this will help my mother feel a little better in terms of side effects.
Thank you both again for responding and continuing to respond. This has been an incredibly lonely journey so having anyone to just bounce a thought off of has been a blessing.
Take care everyone.