New Member - Low Risk MDS
I was diagnosed with MDS back in 2010. My Hematologist said that mine is a low-risk type. I had to switch to a different Hematologist in 2017 because of insurance limitations, but I'm now on Medicare, so I'm going later this month for a consult with my old Hematologist.
Weíve just been monitoring blood tests. My Hemoglobin was low, around 8.7,when I first saw him in 2010, so I was getting shots of Procrit. But that was back when the criteria was Hemoglobin less than 12. I would be around 11.4 and get a shot and it would boost my Hemoglobin above 12 where it would stay for a few weeks then trend down again. And Iíd get another shot. Then they changed the criteria to Hemoglobin below 10, and since then we havenít done anything for the MDS as my Hemoglobin is never below 10. It dips down then my weak bone marrow finally kicks in and I get the next results and itís around 11.2 and Iím good to go again.
I was also very anemic, and would need iron infusion therapy to add iron. I would get Venofer. My body wouldn't absorb iron, so the only way I could get it was with infusions. And then it would drop, and I'd need more infusions every two-three months. Then in 2015 it stopped and I was absorbing iron again. I haven't needed an infusion of Venofer since March 2015. My Ferritn levels are around 150.
Iím concerned that my results in February 2019 were the worse Iíve had in years.
Hereís a chart showing recent results
Test Jul-17 Jul-18 Nov-18 Dec-18 Jan-19 Feb-19
WBC 3.7 2.5 2.9 2.7 2.9 2.4
RBC 3.42 3.51 3.39 3.34 3.49 3.1
HEMOGLOBIN 11.5 11.6 11.6 11 11.5 10.5
NEUTROPHILS 2464 1490 1839 1658 1769 1481
LYMPHOCYTES 659 673 664 664 728 564
Like I said, weíve been doing the wait and monitor since 2010.
But the February numbers of 10.5 for Hemoglobin and 1481 for Neutrophils and 3.1 for RBC are low for me.
My current Hematologist said that if the Neutrophils drop below 1200 then Vidaza would be recommended. And if the Hemoglobin drops below 10 I could get a shot of Procrit.
I've been lucky with this low-risk MDS. I haven't needed any significant drug therapy. Though I do wonder if my numbers continue to decline, what's next for me.
Thank you for being here.
If you have any insights or experience with this low-risk MDS and how your progression and therapies have unfolded for you, I'd sure like to hear your insights. Especially in way of drug therapies that have worked or not.
SWM 66 yrs old.