Share Your MDS Story

Hello,  I'm Tom (Tommy to my family and close friends). I am 76 (soon to be 77) years old.

My journey to MDS? It was noted in 2019 that a number of my CBC counts were low.  My primary care doctor suggested seeing an Oncologist.  After studying my blood count results and history he thought it might be a result of previous liver disease and an enlarged spleen. I had hepatitis C in the 1990's and was treated multiple times over about a 10 year period before improvements in treatment led to a cure.  However, those treatment were hard on me physically.

My oncologist did suggest a bone marrow biopsy.  At the time I was afraid of the procedure and so we continued to monitor my blood. I was given a diagnosis of pancytopenia and splenomegaly and we continued to monitor my CBC over the following years.

Now, 6 years later  in the spring of 2025 my counts took a downturn and he again suggested a biopsy.  Getting the biopsy at a hospital that gave me pain med and twilight meds was enough to convince me that it would be ok.  It was virtually painless.. Versed is my friend! Although my white counts recovered and we think the drop was due to my having taken the antibiotic Terbinafine with a known side effect of dropping white blood count, the results diagnosed me with MDS-LB-MLD. 

I now know I have some form of cancer that I've never heard of and that I am looking at treating symptoms and am not to expect a cure. I'm convinced that I did no harm in not knowing for the last six years that I had MDS and lived normally. 

So now eight months later my counts are trending down and we are having to monitor my levels closely and deciding when to start some sort of treatment. 

Currently I am still pretty active and for now I am enjoying some wonderful young grandbabies, 2 and 4 years old. And trying to live and enjoy life, friends and family. We will see what tomorrow brings soon enough.