Success Stories?

[Mary Barto]

I’d love to hear some success stories with this diagnosis. I was told treatment can change prognosis.

[Kevin Dugan]

It took a year to figure out what worked for me. In that year I had 5 transfusions, developed AIHA, and was in critical care unit. In last 3 yrs my hgb has been above 11, and no need for transfusions or hospital. I have 1 infusion of rituximab every 2 months.

[lisab]

I have just celebrated my 3 year diagnosis. I had become very weak, lethargic and had trouble breathing. After a bone marrow biopsy they finally figured out I had MDS. My hematologist put me on lenalidimid, asa81, plus a number of vitamins as well. Although I will never have the stamina I once had I am able to live a pretty full life.

[Paula Voell]

Hi Mary,

I was diagnosed with MDS 18 months ago, confirmed by a bone marrow biopsy. I was reluctant to start on Revlimid, so I had a year of blood transfusions (every 6 weeks). It brought the hemoglobin up to better numbers. (My lowest was 6.2 just before a transfusion.)
After a year I decided to start the Revlimid. Part of my reluctance was the cost. So far I have gotten 2 grants of $10,000 each which have paid for the co-payment that insurance doesn’t cover.
The best news is that my last hemoglobin count was at 14.2, which is within normal range and higher than the transfusion numbers
.
There is a downside that I am dealing with. I have a very confused intestinal tract, which causes constipation for several days at a time followed by several bouts of soft stool/diarrhea. I can’t figure out the right eating/laxative combo. It can be limiting because I am not sure when this will occur.
Since this is not a constant I am able to have a productive, happy life.
Best of luck to you.
Paula Voell, 80 years old

[Mary Barto]

Thank you for sharing your stories. I’m praying I have success. I can see by reading this won’t be easy but I have 7 grandkids I want to see grow up.
Thank you again

[Kathie Wolf]

My hubby was diagnosed with very low risk MDS in 2017 at 71. He was a watch and wait for about a year. Started Procrit in 2019. Worked well, had to stop because his Hgb got over 10. Started Vidaza august 2019, after a year all labs normal. No treatment since Sept 2020 and all labs are normal. Hgb in the 15 range consistently. Blood draws every three months, telephone visit with Oncologist every 6 months…doing everything he’s always done. Hiking, hunting, enjoying the grandkids.

[Jean Ira]

My husband was diagnosed about 3 years ago at 69 with intermediate MDS – seems all counts low, especially platelets. He was on watch and wait for 1.5 years and then started taking Promatca for platelets. Platelets held quite steady for almost a year before dropping rapidly below 5. He ended up in the hospital and other values dropped. He was given one transfusion of red blood cells and also platelets. They discovered he needed matched platelets. After 5 days he was released and began having labs 3X a week and getting matched platelet transfusions 2 -3 times a week and started on Azacidine (Vidaza) in June of 2022, getting injections 5 days in a row and then 3 weeks off. He tolerates the treatments very well and currently has platelets at 255 with no transfusions; WBC 5.0; RBC 3.87; HGB 12.6; ANC 2.7; Neutrophils 54. He now gets labs monthly. He is active and enjoys life.

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