Jim Frey

First post: Apr 3, 2017 Latest post: Jul 18, 2017
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June 2007 I began a journey of medical issues.  At that time my diagnosis was Myasthenia Gravis and Thymoma tumors. Over time the Thymoma tumors were removed and radiated. Since then I have been living daily with MG (Myasthenia Gravis) which is an autoimmune disorder. 
During a recent recheck with my Oncologist Dr Amy Krie for the Thymoma, it was noted my blood work was showing abnormal levels. From the morning when they drew blood and did a CT Scan to the afternoon when we met with Dr Krie she was already working with Dr Galal the Hematologist and Dr Carol Nelson my Neurologist who I see regularly for the MG. 

Dr Galal recommended doing a bone marrow biopsy which was done in mid March. 
I saw Dr Galal the Hematologist on Thursday 3/23 and received a diagnosis: 
CMML-1. AKA Chronic Myelomonocytic Leukemia. 

What does this mean? Platelets are very low 22k. Bone marrow not making enough. White count high 31k. 
Treatment will be a chemo infusion 1 week each month for 5 days in a row I will receive an infusion of Dacogen. This will go on indefinitely. If my cmml responds I could be considered for a stem cell transplant. 

This could be done at MD Anderson in Houston or perhaps U of M in Mpls. MD Anderson is also world renowned for treating MG so we prefer that. 

Recently it has also been suggested we go to IU in Indianapolis for a consult with Dr Loehrer who has a great deal of knowledge in Thymoma and is an Oncologist and Hematologist. At IU they can also do a stem cell transplant. 

A silver lining is that a stem cell transplant could possibly also cure the MG because it is wiping out the immune system and starting it over. 

Praising God for His Great Mercy!!!

Jim and Dawn 

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