Living with MDS: Ryan’s Story Part 1

Hello my name is Ryan Szanto. I am 78 years old and have been an MDS (Myelodysplastic syndrome, blood cancer) patient for 19 years. I would like to convey to you my experiences with MDS. I also hope my longevity with MDS will give you hope and encouragement.

During a routine wellness check, I was diagnosed with Anemia in July, 1996.  I was a very active, outdoor person and did not feel there was anything wrong with me, so I did nothing about it. The next year during another routine wellness check, the doctor wrote in red pen and circled: significant Anemia. He recommended I see my primary care doctor.  I saw her in August, 1997, and had blood tests run over a five week period.  I was told that they did not know what was wrong with me and recommended I see a Hematologist/oncologist, which I did.

A bone marrow biopsy was performed and it was determined that my Anemia was to due MDS. I saw this Doctor once a week for a CBC (blood test) and Procrit shots. During the next five years and nine months, Procrit increased gradually from 30,000 to 80,000 units to keep my hemoglobin at a healthy level. In December, 2005 I was switched from Procrit to bi-weekly Aranesp injections. This was a blessing. The Aranesp dosage started at 300mcg for 28 injections and now continues at 400mcg. I have had a total of 238 injections as of April, 2016

In June, 2001 I had my first blood transfusion of 2 units.  As of April, 2016 I have had 473 units of blood.  By June, 2004, I was in iron overload. My Ferritin level was 2,090.  I started iron chelation with a drug called Desferal which is dispensed with an infusion pump into the stomach 12 hours a day, five days a week. I continued this treatment for 18 months.

In the fall of 2005, The MDS Foundation notified me there was a new oral drug for iron overload called Exjade. It was up for FDA approval in Washington, DC and I was asked to testify as to why the drug should be approved. I was thrilled to go. It would be wonderful to get off that pump! I went with 14 other patients who also were in iron overload as a result of chronic transfusions for MDS, Sickle Cell Anemia, and Thalassemia.

Thankfully it was approved. I started taking Exjade 1,500 mg. daily in January, 2006. Hurray! This was another blessing. Every morning I dissolved the Exjade tablets in water and drank it.

In July, 2015 I was informed of another new drug for iron overload called Jadenu which is a pill to swallow!!! Even Better than Exjade!!! In August I started on 90mg of Jadenu and I am currently taking 360mg. daily.

I took part in a drug trial at Moffitt Cancer Center in Tampa, Florida for Revlimid in 2005, but unfortunately it did not help my MDS. I am not sorry I took part in the trial because it might benefit other patients later on by using my bone marrow for research.


Stay tuned for Part II of Ryan’s MDS Story, same time tomorrow!

 

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