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Old Sun Jun 22, 2014, 02:17 AM
steve_ky steve_ky is offline
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Join Date: Jun 2014
Location: Kentucky
Posts: 33
MDS Diagnosis - Odd Experience

I'm posting to seek advice regarding my father. See questions below.

He is 73 years old and was just diagnosed with intermediate risk MDS. His red and white counts were just outside of the low end of the normal range. No blasts were detected. However, his platelets ranged between 24,000 - 27,000 over 3 CBCs.

We've worked with two oncologists. The first doctor immediately prescribed Vidaza and told my father he could live up to 2 years. We paused for a second opinion from another (more experienced) oncologist. The second opinion doctor examined the test results collected by the original doctor. His initial impression was that my father may only have very low risk MDS - if at all. And, he wouldn't pursue Vidaza like the original doctor for at least 8-10 years.

We chose to go with the 2nd opinion doctor. During this initial visit he performed a thorough round of tests, including a CAT scan to examine the liver and spleen.

One week later, the family arrived for a second appointment to hear the new diagnosis. The doctor indicated that my father may have MDS, but he is puzzled by the test results. Said his platelets dropped to 13,000 - yikes! However, his red and white cells were low but stable, and still no blasts were detected.

The doctor stated the he'd like my father to visit an MDS center of excellence to see a leading platelet specialists. And, he prescribed Vidaza shots 1 week from the day of the 2nd office visit.

Our family goes through 2-3 days thinking dad still has a chance because only his platelets are affected. I have a follow up call with the doctor to confirm our understanding of my father's status and treatment plan.

I learn the following during this conversation:

1. Doctor is certain he has intermediate risk MDS.
2. He can't travel to the chosen MDS center of excellence until he's stable because of the risk.
3. He has pancytopenia instead of just thrombocytopenia.
4. Vidaza could take months to work (if at all), and he will need transfusions to keep platelets > 10,000.

The doctor's direct and sharp delivery of this information was alarming. Neither my mother nor father received any of this information during that 2nd office visit.

Questions:

1. Should I be alarmed by the reassurance this doctor offered our family during the first visit, and prompt reversal during the 2nd visit - i.e. after providing an opinion based upon reviewing the prior doc's test results?

2. Can platelets drop from 24,000 to 13,000 in 6-days time?

3. Should we seek a 3rd opinion before starting Vidaza?

4. Could side effects from the blood pressure and cholesterol medications explain the thrombocytopenia? My father takes 3 medications daily that list Thrombocytopenia as a potential impact.

Thanks in advance for evaluating my plea for advice.
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