Mother Presumed Diagnosis MDS in her 90s

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• October 23, 2020 at 2:46 pm #53227
  Marc DiMaggio

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  I am terribly concerned for my mother. At 93 she developed low blood counts (HGB, RBC) and the cell types in differentials indicate to medical professionals that she has MDS. No bone marrow was performed to confirm, it is not recommended. Lately, she went below 7 for her HGB and had 2 blood transfusions. She is on procrit but now two physician practices tell us they are not using procrit but must switch to aranesp. Where can I go? Are there specialists in PA? She also has treated high BP, stable CKD, and mild CHF!! What will this lead to and how can I help her? Thank you, Marc

  October 26, 2020 at 10:05 am #53232
  stacey

  Participant

  Marc,
  Where in PA are you and your mom? I highly recommend Dr. Selina Luger — she has extensive knowledge about the disease & treatments and is the doctor that was first recommended to me from another local oncologist after a possible MDS diagnosis. She is affiliated with the University of Pennsylvania in Philadelphia.
  Secondly, most patients do get a bone marrow biopsy & aspiration (takes small piece of tissue and fluid to look at under a microscope) to confirm the MDS diagnosis, but perhaps they didn’t because of your mom’s age. Do you know:
  1) did they rule out a low B12?
  2) Also, did they look at the reticulyte count for your mom in any follow up bloodwork?
  -Stacey (5q- MDS since 2004, age 50)

  October 26, 2020 at 10:31 am #53233
  Marc DiMaggio

  Participant

  Stacey,
  Thank you for your reply to my post. We did visit UofPA for a second opinion last summer, I need to confirm but after looking at Dr. Luger’s website I believe we saw her in Philadelphia. She did a complete workup, recommended bone marrow biopsy. B12 level were high normal in late 2018. In reviewing her health portal lab work, I do not see any reticulocyte count. May I ask the significance of this number? I am trying to understand the value of a bone marrow biopsy.
  -Marc 10-2-2020

  October 26, 2020 at 11:26 am #53234
  stacey

  Participant

  Marc,
  In the very beginning, my CBC flagged low hemoglobin, low RBC and high MCV count (MCV>100) which lead to a diagnosis of anemia. In trying to find the source, they first questioned if it could have been a B12 problem (I was only 34 then and it was more likely than MDS), so they gave me a B12 shot (in place of testing and waiting for results); they said it would be faster. It didn’t help. Then I was given a bone marrow biopsy by my local oncologist and referred to Dr. Luger for discussion of the results. This gave them more detail about the look of the cells (for example, they were large and abnormal in appearance) and also the knowledge that it was specifically caused by a defective loss in the arm of part of my 5th chromosome. The advantage to knowing that was that the doctor could zero in and recommend my treatment with a daily capsule called Revlimid which has great benefits in patients who have the specific 5q- subtype of MDS. I am still on this drug today and it allows me to live transfusion free.
  In other words, the doctors will confirm your mom has MDS and identify which subtype she has and be able to make better recommendations for a treatment plan that works for that subtype based on what they see from the BMB (bone marrow biopsy).

  Because I had a BMB, and I assume they could get all the additional information they needed about my RBCs from that, I never heard mention of a reticulocyte count. It can be additional information to zero in on the diagnosis. Perhaps the doctors figured out this information from the bloodwork she already had somehow, or maybe they didn’t feel they needed it. I was trying to figure out how they were so definitive it was MDS with bloodwork and no BMB.
  -Stacey

  October 30, 2020 at 9:16 am #53247
  stacey

  Participant

  Marc,

  I meant to also pass along to you the name of my local hematologist/oncologist as well for your mom:
  Dr Christine Szarka with locations in Collegeville, PA and Paoli, PA.
  She spends a lot of time with her patients, is a terrific listener and is very kind.
  I think you and your mom would like her, and she could manage your mom’s care and is great at following up on bloodwork results as well.
  There is a preview of Dr. Szarka on youTube that you can watch.
  Best wishes to both of you. Take care,
  -Stacey

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