Consistent drops in HGB and RBCs - MDS?

[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

[JordanN]

Hi, Halo!

I'm sorry to hear about all the difficulties your father is having. My father is also 80 years old and has MDS RAEB-2 with 18% marrow blasts. When he was first diagnosed with MDs 10 months ago his Hgb was 8, and since then he has needed at least one transfusion about every 2 weeks. It tends to fall gradually over a week or two, but occasionally he will have it drop dramatically in just a few days. Everyone seems to be quite different with this disease, but it seems from other member's stories, that this is not an uncommon pattern. Also, when my dad was on Vidaza, his Hgb would drop 2 or 3 points (so from 8 to 5 or 6) by the fourth or fifth day of Vidaza infusions. For him, his hgb never rises without transfusions.

I hope the doctors can find an answer to your dad's foot swelling and pain - so uncomfortable and scary for him!

I wish you and your dad the best of luck in all of your treatments and hope you have a wonderful new year together!

[Halophila]

Hi JordanN

Thank you so much for the information - it's comforting to know that my dad isn't the only one with the problem (it certainly can seem that way). Its been a mystery from the outset. I should have mentioned that during his initial diagnosis, HGB was about 78, and after 3 units of blood it had only increased to about 89, then the next three up to 102. Seemed a rather slow increase with so much packed red cells going in. Sounds like our fathers have a very similar pattern going on.

Many thanks again - this is very useful information. Happy New Year!

Halo

[bailie]

I am sorry about the diagnosis. I was struck by the flip comment, "oh thats just MDS". MDS in the elderly can move very quickly and is very serious, especially RAEB-2.

[JordanN]

Hi, Halo!

I forgot to mention that, at least for my dad, one unit of pRBC's raises his Hgb by about 1 point (sometimes a bit more, sometimes a bit less). It does seem like your dad's numbers don't increase as much as per unit of blood as some others do. There are several people on the forum who are really knowledgeable about the actual MDS process and may be able to shed light on why your dad's response to transfusions seems low. My dad's WBC and platelets are very low as well, and we do notice significant differences in his response to platelet infusions each time (sometimes a 30 point increase that lasts for 3 or 4 days, sometimes a 5 point increase that doesn't last more than a day)- don't know why and can't get a good answer from the doctors.

Bailie made a great point! I hope your doctor is really listening to you and taking the time to answer your questions.

Your comment was really sweet - it does feel very lonely dealing with this disease, but you are not alone, and everyone on here wishes you all the best and can understand what you and your dad are going through! Continued wishes for good luck and a happy new year!!

[Halophila]

I want to apologize for dropping off the face of the earth - I was traveling. Thank you very much for all your help and advice - it's definitely helpful. Most recently, my dad is on his 3rd round of Vidaza and WCC numbers seem to be on the increase. But unfortunately, he is still having trouble with these HGB numbers. Platelets are up, but overall HGB doesn't seem to be shifting (currently 9.1) even after transfusions. What gives? I should mention that I'm a scientist, and to me it looks like there has to be some kind of removal of blood cells, but all tests point to the negative on that. If one, say, puts in 3 units of blood, it should increase overall HGB numbers - it shouldn't stay exactly the same unless there is a bleed or some kind of hemolytic activity.

I will keep everyone abreast of what is happening as it may be of interest to others here. Thanks again for your help and advice!

[PaulS]

Hi Halo - I understand that Vidaza often makes blood counts drop before they go higher - perhaps the reason your Dad's numbers aren't showing improvement after a transfusion is due to the transfusion masking a drop in his own Hg production caused by the drug. Good that his other numbers are up - and 9.1 isn't alarmingly low, although your Dad will probably feel fatigued - Best - Paul

[DanL]

Halophilia,

Many members on the forum have experienced transfusions that did not seem to have as big of an impact as one might predict. It may be the match, the age of the cells transfused, or some other cause, such as the chemotherapy. Hemolysis usually starts to show up in liver and kidney function tests as they are taxed a little more when hemolysis occurs. Some of the blood count machines will show abnormal results when hemolysis is present as well.