Connect
← Return to Just got my blood test results today. I have MDS
Discussion
Just got my blood test results today. I have MDS
Blood Cancers & Disorders | Last Active: 3 days ago | Replies (25)Comment receiving replies
@sonieaml
When I was diagnosed with MDS/MPN/sMF in 2017 my Oncologist at Sloan said the life expectancy for this overlap disease was 5-10 years and that it would most likely mutate to AML. Originally, on the MPN component, I had ET, with a platelet count of 80,000. Last year the MPN component mutated to PV. My platelet count is now around 100. With PV, your red blood cells become overactive and they get very large. So I have to get a phlebotomy every month. My current labs indicate a significant increase in blasts and the amount of immature white blood cells. That most likely means AML but I have to undergo more tests to confirm that. I know that once you get AML it's really tough. We’ll see.
Replies to "@sonieaml When I was diagnosed with MDS/MPN/sMF in 2017 my Oncologist at Sloan said the life..."
Connect
@mjpm2406 Thank you for that breakdown and description!
After my induction therapy the AML treatments have decreased significantly. From Dacogen 5 days every 4 weeks along with Venclextca for 14 days to 1 day of Dacogen and 2 days of Venclextca every 6-7 weeks now. My CBC numbers (WBC/RBC/Platelets and Neutrophils and more) seldom get into the normal range. My Hem/Onc thinks the SF3B1 may be the cause.
I am actually a candidate for no chemo in my port/move to strictly pill form! The results of this latest MRD test will drive that treatment option. Granted AML is no cake walk but it is not the death sentence it was even 2 years ago. That is when I was told without a bone marrow transplant I could not be cured. I elected NOT to have a transplant and look now…no FLT3 or NPM1 mutations were found in Dec after being 89% of my blasts at diagnosis 2 years ago! My prayers and gratitude along with my AML team have me feeling so good I just started a second part time job. I am living my best life and give thanks every day. As we know every person will have their unique experience (read challenges). My prayer for you is you will also get to live your best life one day too.