← Return to Living with MDS (Myelodyplastic Syndromes)

Discussion

Living with MDS (Myelodyplastic Syndromes)

Blood Cancers & Disorders | Last Active: 4 hours ago | Replies (188)

Comment receiving replies
@statmatics

Hi Pat -- It took about a year for the hematologist to cement in an MDS diagnosis. Before that he would call it using wishy-washy words like "lazy bone marrow" and "a tendency toward MDS." As I understand it, MDS in particularly hard to discern, even with a bone marrow biopsy. Again, I am an amateur, but you can certainly ask for Procrit (or Retacrit) treatment, which is a well-known treatment for low hemoglobin. There might be reasons your hematologist has not suggested this, but Rachel finally took Retacrit and her numbers are improving nicely over the past few months.

Jump to this post


Replies to "Hi Pat -- It took about a year for the hematologist to cement in an MDS..."

Thank you for this information I really appreciate your comments!

This - and others who have posted similar - is quite helpful as it seems am beginning to head down this path. 6 months into bloodwork to figure out what / why I was not feeling myself last fall while training for another 50k trail race and legs feeling like ice on the inside.
Initial discovery was Leukopenia along with known slight anemia (known for some endurance runners) in January.
Six months in and latest results are WBC's have recovered a little bit though still 3.8, RBC 4.0, Hgb 12.3, HCT 38, and PLT Ct has been on the decline though still normal from 288 down to 239.
Hematologist has said she is suspecting MDS now that other things have been eliminated. Next round of bloodwork in Aug and she said plainly if Hgb goes below 12 it'll be time to do a marrow test.
I'm starting to experiment with sound waves btwn 10 - 90 MHz listening to these in headphones and then also placing on my legs. Worth a shot!
Anyway, I am blessed to have found this forum and is amazing to read these experiences / what folks go through and the resilience found in many words.
Cheers