MDS Diagnosis and Treatment

Dear Friends and Family,

As many of you are aware, I was recently diagnosed with Myelodysplastic Syndrome with multilineage dysplasia and excess blasts – MDS-EB-2, a form of blood cancer. I have been more tired in recent months and consulted my GP in the Methodist Hospital system in July who subsequently referred me to a hematologist. After multiple rounds of blood work confirming anemic conditions (e.g., low red blood cell counts, low hemoglobin levels, low platelet count), I had a bone marrow biopsy performed which confirmed my diagnosis. I have since become a patient in the MD Anderson (MDA) Cancer Center here in Houston, and they have confirmed my diagnosis following additional testing, including a second bone marrow biopsy. I am considered a “high risk” patient due to the % blasts that were found (15%), but have been informed that my MDS should be fully treatable with several months of chemotherapy followed by a bone marrow stem cell transplant. This is wonderful news, only exceeded by the news we got this week that I have been selected to participate in a clinical trial with an exciting new capabilities.

the primary drugs used to treat MDS are known as hypomethylating drugs, either azacitidine (Vidaza) or decitabine (Dacogen). Both have traditionally been  supplied via IV injection in multiple cycles, i.e. repeated cycles of 5 to 7 days of injections followed by 21 to 23 days rest/recovery. the purpose of the treatment is to kill the blasts and allow for a subsequent stem cell transplant. Both drugs have shown high efficacy levels and success. The positive part of the study I will be participating in is that MDA has developed a new drug combination of cedazuridine and decitabine that will allow for oral ingestion rather than IV injection of the active treatment chemical. The cedazuridine effectively ties up a digestive enzyme that would otherwise make the decitabine ineffective if given orally. This new drug combination is entering Phase 3 testing for FDA approval and I will be part of its success. Results during Phases 1 and 2 have been excellent.

I expect to begin treatment the week of October 15. Initially these drugs will significantly affect my immune system (by design), but will ultimately kill off my bad blood cells allowing for replacement of my bone marrow stem cells and effectively creating a brand new factory for my red and white blood cells and platelets. It will be a fairly long road, but one with a very positive ending. At the end of the treatment I will fully recover and all MDS concerns should be fully eliminated. I will have to restrict my travel during the treatment period due to concerns about my depressed immune system, but otherwise expect with your full support to continue all work, family and recreational activities that I now enjoy and thrive on. I have established this blog to provide weekly updates of my status so that you can be kept informed of my status and progress and share my healing process as I proceed through this.

I am forever grateful for my wonderful family and friends who have always stood beside me through all trials, tribulations and moments of joy and look forward to your continued support.

Keep me in your prayers,

John Loper