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Apr 3, 2017 Latest post:
Jul 18, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
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.