MDS types: How did you find out what type you have?

Hi Holly. Yes, there are different types of MDS. The classifications help describe the disease, how likely the disease is to progress and the need for treatment. Doctors use lab tests such as a bone marrow biopsy, blood tests and sometimes genetic testing to find out the type of MDS a person has and what type of treatment is necessary.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
Do you have an appointment coming up where you can ask your doctor? Refresh my memory, Holly, what type of treatment are you on?

Hi Lori and thank you for your reply. I was diagnosed from ITP to MDS maybe 4 years ago. I had a second bone marrow biopsy when my platelets reached 55 and it showed 2 mutations. SRSF2 and TET2 and an undeterminable RUNX1. I have had 2 oncologist/hematologist and neither commented on type of MDS. And I did not know there was a different one so of course I did not ask. My platelet count varies between 62 and 72 and unless it drops again he will not be doing any further testing. I am under no treatment plan, just the watch and wait. That is fine with me. I cancelled the May appointment because the Doctor may spend 3 minutes with me. I just figured I'd wait till September and have my PCP look at my blood work and if it drops I'll go back to the oncologist. (That may be stinking thinking) My biggest reason I changed to the 2nd doctor was to get on the same network. However, neither of them are blood cancer specialist. Don't know if that matters. Like all with MDS I am tired and bruise easily. I get my chores done early in the day so by 4 pm I am done for the day.

Thank you again for the response

hollie

Hi Hollie,
I have MDS type Ib2. It’s more ‘high risk’ having to do with number of blasts in my bone marrow. But my Dr never told me “Ib2”; I saw it in his notes. So we know it’s high risk, I’m being treated with dacogen, & being considered for a stem cell transplant.
If you can, try & find a hematologist in your network who specializes in blood/bone marrow disorders. I have discovered through all this that ‘regular’ oncologists don’t have the expertise the special hematologists do. The oncologists should be referring you to someone who can better treat you.
Keep us posted!

I might add that some types of MDS are low risk & those patients are a ‘wait & see’ thing. But please get a bone marrow biopsy from a reputable hematologist. I didn’t want one at first, but it gives so much valuable information to go forward with your treatment.

I agree with you totally.