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.

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.

First time post here. We live on the Sunshine Coast an hour north of Brisbane in Australia. Retirement and old age is our biggest industry. I was diagnosed with MDS in early Dec24 and it took a while for me to get my head around the diagnosis. I had the hip biopsy which confirmed his diagnosis. We informed our 3 grown up children well after a terrific Christmas but I found myself immediately writing about my early years. It takes a while to digest the whole thing when there’s talk of chemo, transplants, blood counts, transfusions, medication etc. I decided to fly to Bangkok and talk to 2 cancer clinic hospitals over there but 65 is the cut off age for transplants and the other was an alternative style treatment for 8 weeks but they have never had an MDS patient before and very expensive AU$100k.
My 3 monthly checkup showed my red blood levels still dropping but I still feel great. I play golf 4 times a week and haven’t noticed any changes whatsoever. I really don’t know what’s in store for me but this wait and see what happens doesn’t feel right somehow. I have been referred to another specialist in Brisbane who does the actual stem cell replacement operations and hopefully his opinion will sink in. I’m 70 and reasonably fit and haven’t shared my diagnosis with many. I’m still not convinced that I am crook. I’m now at that stage where I want to know what is next or what am I supposed to experience. The only spiritual beliefs I have is the Golf Gods and Luck. That may shock some but we are all different. I’ve experienced an unbelievable life with a terrific wife and I’d rather this happen to me than any of my family. If anyone is in a similar position, I’d like to hear from you and what you’re being told or have been prescribed. If I can make 80 in reasonable condition then I’d be more than happy. Cheers

Thanks so much for sharing your journey. You are very strong and a great example for myself and those beginning their MDS journey.
I find that if I'm "perfect" in my diet, light exercise, abstain from alcohol and capture 8 hours of sleep I feel reasonably good the following day. But if I play a 4 hour round of golf and have a cocktail at the 19th hole, or if I go out to dinner with friends and go off my Mediterranean diet and share a bottle of wine and get to bed an hour later than normal, then the next day I am impacted and my increased fatigue results in the need to take a day off.
Certainly not a major lifestyle issue compared to most folks on this MDS help line, but I'm early in my diagnosis and I want to attack any and all complications from this disease.

I truly appreciate all the feedback and information I receive from Mayo Clinic Connect and the courageous folks that share their individual disease insights. My PMR journey last year was positively affected by all the information I captured on this site. It is a comfort to know that folks are fighting and in a majority of cases winning their battles and the war!