[JBC]

Hello Cristy and Debra. Ny husband was diagnosed with RDMD (fancy way of saying low counts in all three blood lines) in 2011. He responded well to Vidaza for almost five years and then had an allogeneic stem cell transplant at ago 71. He seems to no longer have MDS (this is HUGE!!), and no big problem with Graft vs. Host Disease (this is HUGE!), so he is one of the lucky ones. It has been a slow recovery and there is a lot he cannot do, but he is alive and has been able to enjoy a decent quality of life. Even though he is getting older, he is getting stronger, at least by inches. MDS can be a long journey, with twists and turns, and everyone is different. The MDS Foundation is one of the best sources of information, and we contribute money to them to help them with research and their wonderful Patient Forums. BEST WISHES!!

[JBC]

Hello Amy,

Once it became clear, in 2011, that my husband had a real problem, I went back to reports from previous physicals and charted his blood counts starting in 2003. The hematologist could then clearly see the slow decline in white cells, hemoglobin and platelets. Hubby had been originally treated by the family doctor for B-12 deficiency. In the summer/fall of 2011, bone marrow biopsies confirmed suspicions of MDS, specifically RCMD, refractory cytopenia with multilineage dysplasia. He had no symptoms – no bruising, no fatigue, and no illnesses. At first, the worst problem was the white count, specifically low neutrophils. We were told that a fever or pneumonia could be life-threatening. He responded well to Vidaza from 2012-2016. When that wasno longer effective, he had a stem cell transplant, unrelated donor in November, 2017. So we figure he had MDS for at least 14 years before needing the transplant. Best wishes, Amy. I am so glad you found the MDS Foundation site.

[JBC]

So sorry to hear your story, Tracy. You are in a tough place. Are you a candidate for a stem cell transplant? Have you been tested to see if you have a donor match? Sending good thoughts your way…

[JBC]

My husband would have a CBC almost every year as part of a routine physical. Around 2003, his white count was lower than it should have been and the family doctor tested for B-12 and it was deficient. So my husband started taking B12, but the white count remained lower than normal and slipped a little each year. In 2011, that doctor retired and the new guy said he would feel a lot better if a hematologist looked at the numbers and told us there was no problem. At that point, I charted WBC, RBC, HGB, platelets, MCV, etc. from 2003-2011. The hematologist suspected MDS when seeing the gradual decline across the years and a bone marrow biopsy (and a second opinion BMB) confirmed the diagnosis. It was hard for us to wrap our heads around it all, since he felt fine, was working, and was playing tennis. Treatment was begun in January of 2012. Best wishes to you.

[JBC]

Hi Jean – I see that you wrote on Christmas evening. My husband had pancytopenia, with white cells being the biggest problem for a while. (RCMD) He responded well to vidaza for a very long time. I wish you well.

[JBC]

Ruth – please read 100 Questions and Answers about MDS, published by the MDS Foundation.

Myelodysplastic Syndromes, is published by the Leukemia and Lymphoma Society. I just found it online at https://www.lls.org/sites/default/files/file_assets/mds.pdf

The more you understand, the better you can communicate with doctors. Try to get to a Center of Excellence.

Best wishes.

[JBC]

So glad you are responding well to Vidaza. My husband responded well for several years and had a SCT after 59 months on Vidaza. He had a consult with a transplant doctor after two years on Vidaza, and the doctor said, “Ride this remission as long as you possibly can.” At that time, he had a biopsy and was entered into the registry and we found out that he had multiple perfect matches. So he rode the remission as long as he could and we lived our lives around the treatment schedule. We are now at Day +60 and doing well enough so far. Best wishes, Stan.

[JBC]

My husband responded well to Vidaza for four and a half years!! Looks like the end of the road, but we are most grateful for the time it bought. Best wishes to all.

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