← Return to Looking for experiences with the progression of MDS

Discussion
Comment receiving replies
@schindsm

Hi All,
My Mother (77yr old) has had MDS for a few years now, I found this board while trying to find info on treatments for her. I see the updates on here seem to have stopped close to 1 year ago. Maybe it can get started up again and we can get some updates on how you are all doing?
My Mom had been treated with Decitabine for over a year, that was paused to see if it was causing her low RBC or if it was the MDS. That was 5-6 months ago. She is going to start Azacitidine with Venetoclax next week.
She has become transfusion dependent. When her numbers are up, she is very active, healthy and independent. Hoping this new treatment is not too rough on her and helps with reducing thee frequency of her transfusions. Any info about this treatment would be greatly appreciated. Thank you all for sharing and I wish everyone the best.
Steve

Jump to this post


Replies to "Hi All, My Mother (77yr old) has had MDS for a few years now, I found..."

Hi Steve, @schindsm, Welcome to Connect I’m sorry to hear about your mom’s diagnosis with MDS but you’ve come to the right place to be able to chat with others who have this blood disorder. We have quite an active support group for MDS with many treads…we tend to stray a lot. 😉

So here is a current conversation that might be a better fit. You’ll meet members @momz @dabls6 @kathy115 @lorieafoote @smetzing @jrwilli1 @nbadry @rrivory @honeymae and many others who have MDS or are caregivers.

Living with MDS https://connect.mayoclinic.org/discussion/living-with-mds/

You mentioned your mom was on a break from treatment for 5-6 months. Did her red blood count go up during that interim? Has her lab tests shown blood cells called blasts?