[Halophila]

Greetings All,

First off, I am new here, and want to thank everyone in advance for their advice. I am writing on behalf of my father, 80, who was diagnosed in June with MDS-RAEB-1 while living in Australia. After his initial diagnosis his HGB levels were 100- 120 (g/L). However, they started to drop to below 100 reaching low values ~ 80 - 90 within a month. While in hospital after his initial transfusions (6 units in a week), his levels increased to only ~102. Endoscopy ruled out GI bleeds in upper and lower GI tract. Hemolysis tests were negative.

In late August he received a transfusion (his HGB levels were again 80ish) and immediately after his right foot swelled intensely and became firey red and caused him a bunch of pain. That continued for about 6 weeks and then self-resolved. During this period his HGB levels stayed around 95 - 105, he did another 4 transfusions in the following weeks.

In early November a bone marrow biopsy revealed blast cells > 13 and very low white counts. At that time he started treatment with Vidaza (Azacitidine) which was tolerated well for the first round, then 3 weeks later his second round he experienced nausea. After the first round and 2 transfusions, his HGB was 118 and stayed that way for a couple of weeks. Then after the second round and 1 transfusion and an injection of neulasta to increase WBC count, his foot again swelled with intense pain, and within 2 weeks his HGB was back down around 85, triggering another transfusion of 2 units. Today (1 week later), his HGB was only 89, so he is back tomorrow for another 2 units.

He is on a fairly low dose of warfarin (blood thinner) as a consequence of a pacemaker, atenolol and hytrin for enlarged prostate. Kidney function is 50 - 80 %, he is on diuretics to reduce fluid retention in the ankles.

My question to everyone here: I cannot understand why his RBC/HGB is decreasing so rapidly (15 - 20 g/L over 7 - 10 days). The treating doctor is saying "oh thats just MDS", but I suspect there is something up. By my understanding MDS results in inadequate RBC formation, not removal/lysis. Does anyone else know if MDS could cause this significant MDS drop, or would you suspect something else going on?

He is otherwise quite perky and walking more than he has in the last 10 years. His outward symptoms do not seem to match CBC results.

Many thanks to everyone for reading and in advance for your comments!

Halo