Looking for experiences with the progression of MDS

Hi I googled this and the Centers for Excellence in the USA are The Mayo Clinic.

Hi Brenda! New here. Just diagnosed in July, but evidence suggests I have had the disease since 2020. You can go to Mds-foundation.org and order books about MDS, but more importantly use the online tool to find out what risk level the MDS has(Ipss-r or ipss-m). It is an important factor, but understand that about 1/3 of cases will develop Acute Myeloid Leukemia which has a lower survivability rate.

I was diagnosed with MDS over two years ago. My Hgb was at 7 at that time. I had a couple of transfusions at that time.
I am on my 30th cycle of Vidaza shots and now my Hgb is averaging 13.8. It took a few months for the Vidaza to kick in. I am feeling well. My white and red labs are all good as well at my platlets.
Good Luck to you,
Mike

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

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?

I am on my 11th cycle of viadaza and ventoclox with astounding results. Hemoglobin has lingered behind but improved to 12.5. Platelets bounce back as well. WBC and ANC are in acceptable ranges.
FYI. MDS diagnosis was rendered over year ago followed by blasts to 26%. Lab results at that time rqr transfusion almost daily. I was admitted to hospital for viadaza and ventoclox...it did the job. It's taken 10 months to find a sweet spot on viadaza volume. AML is in remission but MDS lingers. I possess 5 mutated chromosomes.
Best on your journey

Her red blood counts continue to drop, until she gets a transfusion. BlaST number has been low, at 4% on last BMB.

Hi Steve, it’s not surprising your mom’s red blood counts continue to drop if her bone marrow isn’t working correctly, not producing many new ones. MDS (Myelodyplastic syndroms) are a group of blood cancers that affect the bone marrow and can result in a low levels of blood cells. When MDS affects red blood cells it can lead to anemia and sometimes transfusion depenancy when counts get seriously low.
You mentioned your mom will be starting Azacitidine with Venetoclax. That combo has a good track record for helping people who are transfusion dependent and also slows blast production. Has she started her treatment cycle yet?

Not yet, she had to delay stating due to having flu like symptoms and then her numbers were low and she delayed it again. Her main oncologist also thinks this could be hard on her (although our 2nd opinion from Rochester Mayo did not feel the same), so there is some hesitation. From the research I've done, I feel like she'll be fine, but it's hard to convince her if that right now.
Thank you for responding and providing insight, I really appreciate it. ❤️

That’s a conundrum about the meds. To do nothing could mean a progression of the disease and an increase in blasts.
What are her alternatives if she doesn’t start the Azacitidine with Venetoclax?