Relapsed MDS

[Sherry Flury]

My 73yr old husband was diagnosed with MDS high risk RAEB1. He started decitabine in Jan ‘16 and went into complete remission per his BMB in May ‘16. His wbc, hg and platelets were all in the normal range until Jun ‘17 when ever so slowly they all began to drop. A BMB in Oct ‘17 showed the decitabine was no longer working and the MDS had returned. Our oncologist at Mayo Clinic said there wasn’t much that could be done after failure with the exception of a clinical trial. He isn’t a candidate for BMT. They have two trials he qualifies for but no openings. In the meantime all his blood counts have been holding fairly steady with hg at 11, platelets about 139 and neutrophils about 1.61. My (our) biggest fear is that he will begin to decline rapidly, possibly progressing to AML, and Mayo says there is nothing more they can do. We are considering a trip to MD Anderson to see if they have anything, even a trial, that could help him. Does anyone have any experience at MD Anderson? Does anyone have experience with relapsed MDS and if so were there any treatments that were of help to you? Thanks.

[Sherry Pratt]

Why are they saying he isn’t a candidate for stem cell transplant?

I would get second opinion at Cancer Treatment Centers of America. You can email me pratt8075@aol.com .

[Sherry Flury]

He has had triple bypass surgery and currently has 13 stents in his arteries. The BMT team told us he only had about a 50% chance of surviving the transplant and then a 30% chance the MDS would return. We didn’t see those as good odds at the time. Why do you suggest Cancer Treatment Centers of America over MD Anderson Cancer Center? Just curious as I don’t know anything about Cancer Treatment Centers. We chose MD Anderson because they are a research hospital with expertise in MDS and have many more trials available than the other cancer hospitals/centers I researched. Since we are in MN, Houston is a long trip not to mention expensive. I would love to find something closer to home.

[Afreemanswife2]

I am 56 years young and have been diagnosed with 5q-MDS and have been going to MD Anderson in Houston since October of 2013. Was diagnosed in 2011 but, transferred from a private Oncologist to MD Anderson.

MD Anderson, The Leukemia floor is where I go to see my doctor and fast track for my blood work. The doctors and the staff have all been great. I see people from all over the world there.

My blood work last month was (Neutrophil Abs 0.52 K/uL, WBC 1.7 K/uL, RBC 3.17 M/uL, Hgb 10.4 gm/dL, Platelet count 62 K/uL ). I will have my next BMB next Tuesday to check for mutation. I am currently taking Revlimid 10mg per day. Mine is not high risk like husbands is.

Patricia

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