new member, long story

[janet skidmore]

Hello all, I am new to this board and have been browsing the very informative threads for a few days. I apologize in advance for the length of this message.

My husband (Bob) was diagnosed with MDS about two months ago. He is 86. Until about 6 or 7 years ago he still worked actively on our farm, one never would have guessed his age. About 25 years ago he had heart bypass. He recovered and had no more acute coronary artery problems. Starting about 6 years ago he was diagnosed with afib, congestive heart failure, pernicious anemia, hypothyroid, and PMR (polymyalgia Rheumatica.)

He is on lasix, warfarin, monthly b-12 shots, levothyroxine, and prednisone. I do not have his blood work over that time but I know that his b-12 levels normalized after treatment. His exercise tolerance has steadily declined and his heart function has gotten worse. In 3/18 his shortness of breath and fatigue increased and he had an aortic valve replacement. This was done with a catheter as his heart cannot withstand surgery. Over the last two years his other heart valves have become compromised but no surgery is possible.

I have seen blood work from his workup for the Valve replacement (9/2018). His hematocrit was 31.7, hemoglobin 9 – 10 on different tests a few weeks apart, and platelets about 100. No doctor took note of his low counts or at least they were not mentioned to us. I believe his counts have remained somewhat low since then.

In Sept ’20 he had blood work again and the Dr. mentioned his hemoglobin was about 9. He said probably “some dysplastic problem.” In Oct Hct 27.7, hgb. 9.2. RBC 2.8, In Nov. Hct. 26.5, Hgb. 8.6, RBC 2.6. His white counts are low also (3+-) but neutrophils are normal, lymphocytes low, 477 in Oct, 321 in Nov. So not from MDS? His platelets were 87, then back to 107.

The Dr. said he was borderline for transfusion but after about a week he called and said because of Bob’s age and heart failure he wanted Bob to have one. Bob was very weak and fatigued at this time. He was unable to walk more that 20 -30 feet or stand more than a few minutes. It is very hard to tell if this is caused by low blood counts or heart dysfunction. He had two units of RBC on Dec. 9. Bob reports he feels better but I see that he is still very fatigued and weak, though perhaps a bit better that pre-transfusion.

He had his monthly checkup on Dec. 21st and no blood work was done. Dr. intends to check at next appointment, 1/15. Again he mentioned probably Myelodysplastic Syndrome. Iron is normal, B-12 is normal. Dr. told him that he will need regular transfusions and if he gets weak again to call.

As you can see the Dr. gives minimal information. This is OK for my husband as he has no interest in or understanding of the details of medical matters. The Dr. tells him to do this or that and he does it if it suits him. I am the opposite, I collect test results and research everything. So I figured out what was going on after Dr.’s first reference to a dysplastic problem. I know its a cancer and incurable. Of course I have no real idea of what the progression will be and how his heart will stand the strain. Seeing how long he can go before another transfusion my give some idea of how quickly things may progress? I suspect he had MDS in 2018 when his counts were low before the valve replacement.

So now to my question. The Dr. has not recommended a BMB and I suspect the results would be beside the point. I don’t think he could tolerate side effects of chemo. His kidney function has also been declining and is now bordering on stage 4 CKD. His epoetin level was high so I don’t believe ESA would be useful? Is this correct or would a BMB give useful information. More aggressive treatment for someone in his very compromised state, useful or not?

I also struggle with how much to tell him and his adult children (they are my step kids). Probably no answer for this but it helps to tell someone my thoughts. Does he/they need to hear “cancer”? They are aware he had a transfusion but asked no questions. They know his condition has declined in the last two years and that he could have a catastrophic event, (stroke or arrhythmia) at any time. I don’t know how much or if this diagnosis changes his prognosis. It seems fatal events from MDS are infection or bleeding. Since his platelets are not at a critical level (?) and neutrophils are normal he may avoid infections (?).

Thanks for reading and letting me get all of this out.

[Kevin Dugan]

I think you should get a hematologist who has some expertise with MDS. The fact that his doctor does not check his blood levels at each visit indicates that he may not be a specialist.

[janet skidmore]

Thanks for your response Kevin. This Dr. is not a specialist he is my husband’s regular primary care Dr. He is not forthcoming with details about anything unless I press him. My husband doesn’t care he just does as he is told more or less. I am the one who wants all the details. So considering we seem to be in a supportive care only situation (transfusions as necessary) is depending on Bob’s symptoms, fatigue, etc., at least some of the time, inappropriate? He has an appointment on 1/15 which will be about 5 weeks post transfusion and his blood counts will be checked then. The decision to transfuse seems to be made from a combination of symptoms and blood counts.

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