Living with MDS (Myelodyplastic Syndromes)

My husband, 73, was diagnosed with High Risk MDS 10/23, 8 months into retirement. He has had many BMBs, infusions of platelets and RBCs. Labs twice weekly. He has had 10 rounds of azacitidine shots. He has progressively gotten weaker. So weak he can hardly walk to mailbox. His counts are extremely low; so low sometimes his chemo is canceled. I feel he will roll over to AML soon. He is scared of SCT, but he’s been athletic all his life. It seems his only chance to live is SCT, and I am just waiting for him to decide. His doctor encouraged it when diagnosed, leavening the decision to him. His metabolic table is perfect. I grieve to see him so weak and unhappy.

Hi @girlmidget. My heart goes out to both you and your husband with this emotional MDS journey he’s going through. As his caregiver you’re no doubt feeling very overwhelmed and helpless. I watched my husband age before my eyes when I was going through my AML/transplant odyssey. This illness takes a toll on the patient and the loved ones.

The decision to have a SCT is very personal. The process itself can be challenging with chemo, medications and the lengthy recovery. There are also factors transplant doctors take into consideration before they clear a patient to go ahead. Your husband’s health has changed over the past year and a half since his doctor recommended a transplant at the time of diagnosis.

You and your husband might want to talk to his doctor to see if he is still a potential candidate for the procedure. If not, then that takes the stress off your husband having to make that decision. If he is a candidate, then the discussion might be valuable to give your husband more information where he may not be as fearful. What do you think, would that be helpful?

My husband, 73, was diagnosed with High Risk MDS 10/23, 8 months into retirement. He has had many BMBs, infusions of platelets and RBCs. Labs twice weekly. He has had 10 rounds of azacitidine shots. He has progressively gotten weaker. So weak he can hardly walk to mailbox. His counts are extremely low; so low sometimes his chemo is canceled. I feel he will roll over to AML soon. He is scared of SCT, but he’s been athletic all his life. It seems his only chance to live is SCT, and I am just waiting for him to decide. His doctor encouraged it when diagnosed, leavening the decision to him. His metabolic table is perfect. I grieve to see him so weak and unhappy.

No recollection of mutation. Symptoms only that my blood counts did not go up after eradication hairy cell. How, when, should I engage at Mayo.

I’m glad to read your wife is regaining some normal functions after her stroke. That had to be frightening for both of you!

Telling your family about your diagnosis is certainly a personal choice. There’s quite a bit on your plate already with aiding in the care of your wife. Since you don’t have a treatment plan yet and are sort of waiting for the other shoe to drop, you might end up with a lot of questions you can’t answer for your family at this time.

But you may need them in the future if you go ahead with a BMT. You’ll need to have a full time caregiver for a length of time. Your wife may not be able to meet the challenges of accompany you to appointments, overseeing meals, self care, etc. I’m not trying to frighten you, but it is the cold reality of the first few months after a BMT.

Regarding your MDS diagnosis and exercise.
Moderate exercise is good. You want to maintain as normal and healthy a lifestyle as possible. But you don’t want to overdo things either. If you become fatigued then listen to your body and rest or back off in the intensity. If you require treatment in the future, the healthier you are going into treatment can help with mental attitude and recovery..

Do you recall in your previous blood tests the mention of the term, blasts? These are immature blood cells that become specialized cells as they mature inside the bone marrow. There are generally only a very minimal amount that would show up in a blood smear from labs as they tend to stay in the bone marrow. As the percentage of blasts change in blood work that may determine the need for treatment timing.

If blasts are found in circulating blood it can be an indication of an over-proliferation of the immature cells. As they reproduce out of control, they eventually overcrowd all the other healthy blood cells and then enter the blood stream. Usually there is a mutated gene which doesn’t allow the cell production to switch off.

What were your symptoms that led to the diagnosis? Do you remember seeing a mutation listed in your blood work?

I was diagnosed with MDS IB2 March 2024 age 76. I was told by my hematologist and two others at two different transplant centers that because I was in otherwise good health my age was not an issue for a stem cell transplant. After 3 rounds of chemotherapy my cell counts were normal and my blast count down to 2%. I informed my hematologists that I was opting out of the transplant choosing instead to pursue long term chemotherapy. They agreed. In the interim I had turned 77 in January of 2025 and they were still willing to go forward with the transplant if I wanted it.