I told my Oncologist that I would not go through a stem cell transplant after 80. I’m almost 77. He said we’ll discuss this when and if your MDS/MPN-RS-T mutates or no longer responds to the normal meds to treat this disorder. Sloan has the RS number at 15%. So, do you experience fatigue during the day? I need a 30 minute nap every day. I also have Chronic Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B. The Sensorimotor Axonal Polyneuropathy is an acquired disease while the CMT disorders are hereditary. My mothers family has a six generation history of this disorder. CMT comes down on the X chromosome. No one ever had a genetics test done in the past because whole Exome Sequencing wasn’t around. I went with my three daughters to Weill Cornell in Manhattan to undergo genetic testing. Results indicated one daughter had no mutations. Daughter 2 had the CMT2 mutation. Daughter 3 has both the CMT2and CMT4B mutations. So this sucker that has plagued my mother’s family continues to plague my family.
Glad to finally hook up with someone with a similar case if MDS/MPN. Our mutations aren’t the same but I assume our symptoms may be close.