Myeloid Gene Panel?

[Bossywife]

So we just had our appointment with the Specialist.

He mentioned that hubby's Neutrophils were staying pretty low and after palpitating his abdomen, drew a picture and put an X on the left side (I forgot to ask about this). He seemed surprised that we didn't call him about the broken leg incident and the allergy attacks.

But then he said that the good news is that there is a new test called the Myeloid Gene Panel, where they can actually see how his disease is progressing and if he is a candidate for targeted therapy.

Just wondering if anyone else has had this test and what it means for an MDS patient.

[bailie]

I have had 19 of these panels over the last three years. Every time I have had a bone marrow biopsy I have had a "Genetrails AML/MDS Gene Mutation Panel". The "targeted therapy" could be Vidaza. Did the "specialist" say anything about an enlarged spleen?

[Bossywife]

No, he said he couldn't even feel the spleen.

So what did your panels tell you? He told us it would give us an idea of how his disease is going to act.

Also he did tell me he has RAEB 1.

[bailie]

The "Genetrails AML/MDS Gene Mutation Panel" results monitor any mutations that might show. I had three mutations before transplant (SF3B1, KRAS, IKZF1). The KRAS mutation is a common site for an activating mutation in leukemias. None have appeared since the transplant. Additionally, I regularly have "Cytogenetics Bone Marrow Chromosome Analysis" and "Hematopathology" tests at the same time. Several other tests are routinly done following SCT. There are about three pages of information for each of these tests.

[Bossywife]

When you had the testing before your transplant, did it affect the way you were treated? Like did they speed up the SCT based on the findings? Or did they start on Vidaza because of findings?

[bailie]

For sure the test affected my treatment. I was immediately started on Vidaza to get my CBC counts in position for the SCT. With the mutations I was given about 7-8 months to live without the Vidaza and subsequent SCT. There was not much flexibility. It came down to the basic choice of living with the SCT or quickly going downhill to death. As it has happened by dealing with this promptly, I have only had one transfusion (during SCT when platelets dropped to 8) during the last 3 1/2 years.

I just had a lifelong friend who died this last week from MDS after being diagnosed 8 months ago. He was late getting the diagnosis and treatment.

[Bossywife]

I've always worried about my husband's diagnosis because he was not formally diagnosed until April 2015. But his first "incident" was a mysterious infection with hospitalization with extremely low platelets and CBCs in April 2008. From that point until 2015 his platelets hovered around 45-95. In 2015 I pushed for a BMB and then he was diagnosed.

I always worry about those years between 2008 - 2015... and possibly even before 2008 before he was ever getting blood tests. (he NEVER went to the doctor). I worry that those years are tallied into his "prognosis"... but as we all know with this frustrating disease... prognosis numbers make no sense. Especially as a fairly young man with "early" diagnosis.

Oh well, I guess worrying won't get me anywhere. I try not to obsess, but I just hate this feeling that he's driving around on bald tires and everyone is waiting for him to have a blowout before they do anything.

[bailie]

I think I was going downhill before my diagnosis but I attributed it to just getting older. I have been very active my whole life. I was fortunate to have gone to the ER with kidney stones and got a routine CBC at that time. My numbers were crashing at the time but I was still feeling fine and active. Up until that time I had never been in a hospital as a patient and very seldom sickly.