Finally.... the Big Meeting!

Had the meeting that I was anticipationg for about a month.....well not anticipating kinda like this
Met a specialist today at VA. She comes off as intelligent, compassionate and connected in the community of MDS/AML specialists. Based upon current lab results she ordered 2 units of blood. She suggested the traditional form of treatment that consists of Chemo and ultimately a Bone Marrow Transplant. I explained my concerns about traditional treatment and in particular chemo, she agreed that results have not been great nor have they changed in 30-40 years. However it is still the best option for MDS/AML. Her major concern is to not allow the MDS to advance to AML which is determined when blasts reach a level of 20%. She did not mention any nutritional factors of treatment which I questioned and by her answer indicated that any alternate treatment was not something she had studied. Prognosis without treatment is about 11 months survival with treatment about 18 months (median averages).


My major takeaways from the meeting were:
1. VA will partner with me and support me in any mode of treatment that I choose. (including alternate)
2. I have a type 2 version of MDS and am currently at 15% blasts
3. The type I have is called Refractory anemia with excess blasts RAEB II: 10-19% marrow blasts. Blasts normally develop into red blood cells, white blood cells or platelets. In MDS, the blasts are abnormal and do not develop or function normally.
4. I may choose whatever course of care I wish and VA will support that. Primary courses of care are:
     a. Supportive care - The goal of supportive care is to manage disease symptoms and related problems.

     b. Chemotherapy - The three medicines approved by the FDA to treat MDS are azacitidine (Vidaza®), decitabine (Dacogen®) and lenalidomide (Revlimid®) (The names inside the parentheses are the trade names for these drugs.) Azacitidine and decitabine are approved to treat all types of MDS, and lenalidomide is approved to treat only the 5q- syndrome type of MDS.

     c. Bone marrow or cord blood transplant - The only known treatment that can bring about a long-term remission from MDS is a bone marrow transplant (BMT) A BMT replaces the defective cells in a patient's bone marrow. The cells used in a BMT can come from bone marrow, peripheral (circulating) blood, or umbilical cord blood.

Clinical trials are an option which are being explored potentially in Seattle.

The next appointment is in 2 weeks (Nov 19th) and we will determine the course of treatment provided by the VA at that time.