July 6, 2019 at 7:12 pm #47015
My husband Leon is almost 63 and over two years ago we started a wait and watch journey; his hemo/onco strongly suspecting pre-MDS. Has battled more illness since February/March to present, i.e., food poisoning (x3), throat/tonsil virus, skin infections, Influenza A, etc. We were told May-end by hemo that he has now become neutropenic in addition to the anemia. He wants one more round of blood and is suggesting BMB No. 2 before a concrete diagnosis, although he is strongly leaning towards this diagnosis.
Reading many of your posts, we decided to contact the closest care for excellence center (Johns Hopkins – Sydney Kimmel). Dr. Amy DeZern is one of the head doctors in the field of MDS and Bone Marrow failure diseases. We were told to gather labs, pathologies, other related tests and his doctor’s clinical notes and send them over. I did so. Her assistant called to let us know all was received but when she looked at the dr’s May clinical note, she pointed out that the Center only treats does not “diagnose.” She noted his mention of waiting until August end for final diagnosis. I apologized and asked if she could “hold” the records and we would contact them in late August after leon’s next CBC. She hesitated a moment and said she thought it might be better if she still goes ahead and gives his records to the doc, let her decide. Not sure why. That was 9:30am. We got a call at 10:45am from her Assistant stating Dr. DeZern did in fact want to see him in early August. Question – do you feel that perhaps she saw enough in her opinion to feel a diagnosis of MDS was in order, or, perhaps some other disease?
Another question, Leon has developed some dizziness/nausea over last two days, also very tired. This is new, the dizziness/nausea. Any wisdom at what point we should contact the doc, or is this a normal thing with this disease?
Strange, as a spouse, caregiver, I found comfort in the watch and wait. The recent illnesses and additional new cytopenia has my heart heavy. We are strong though and his attitude is so upbeat!
Any thoughts on my questions is much appreciated.
Best wishes to all here.July 7, 2019 at 10:35 am #47017
Yes Malissa it’s all very stressful for both you and your husband. I find dizziness for me means my hgb is low and usually need blood. A BMB would be the likely next step to find out what really is going on in the marrow. If he is becoming much more symptomatic I personally would push to get it done sooner rather than later to know where you stand.July 7, 2019 at 12:55 pm #47018
Thanks Kathy. One of the reasons I encouraged him to let me set something up at Hopkins was b/c his hemo wanted another BMB. Thought it better to get it done there since they seem so proprietary with specialized testing at their hospital. Did not want a Leon to have to go through a third one. I think maybe my thinking is wrong. We are going to call his local hemo tomorrow and take it from there. Yes, his health and energy have changed drastically. His first BMB showed 65% hypercellular and abnormal RBC morphology. His blast count was under 5% with no abnormal cytogenics, however his hemo advised that these things can change slowly or quickly. Do you think he HOPKINS doctor is seeing him b/c she sees enough to strongly feel he should be there now, despite his local dr. Waiting another month to commit to a firm diagnosis?
I hope you are enjoying this day with smiles and peace.
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