Living with MDS (Myelodyplastic Syndromes)

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!

I was diagnosed 2022. Haemoglobin 102in 2024 my haemoglobin was 82 very tired. Had a transfusion 1 unit. Every 6 weeks. In November I started having 2 units every 8 weeks. This week I went on Lenalidomide. Hoping to have less transfusions.

Hi @brendamarlene! As I’m watching the snow fall in huge flakes right now, I can so empathize with your comment about being too dangerous to walk outside in the ice and snow! We spent the winter in FL and now back home in northern Wisconsin. I miss the ‘non-eventful’ walks on the beach!
Walking is great exercise and for those of us with blood cancers it’s vital to stay as healthy and fit as possible. When I can’t get outside, I actually walk at a brisk pace around the inside of my house, up and down stairs for an hour. Amazing how the steps add up, plus the stairs add in a goodly amount of aerobic segments. Just a thought…until you can get back outside in the glorious Canadian scenery!

It’s encouraging that you have stable blood work and no meds for your MDS at this point. If the time comes when things change, there are medications which may help keep the disease from progressing. But for right now you’re doing great. Keeping up with a healthy diet such as the Mediterranean Diet of fresh fruits, Veggies, lean meats, healthy oils and good sources of protein is beneficial.

Not sure what you mean about beets? They are an excellent source of many vitamins and minerals along with antioxidants. I had AML and there were no veggies or fruits singled out as the most helpful. I have taken beet supplements in the past but really didn’t feel they contributed to my overall health any more than my already healthy diet.

Honestly, whatever you're doing at this point is working well for you so I’d just stay on track! You’re happy, healthy, enjoying life and have a wonderful attitude! Can’t beat that!

How often do you have followup labs?

I am in the early stages of MDS and and looking for any help I can get. My blood word k has been stable for a year and a half and I am not taking meds. Prognosis is it won’t get better but worse. I am 75 and laughingly say I have been tired all my life but no one diagnosed it. Now I really am. I am looking for things like diet and anything I can do to live as normal life as possible.
In January in Victoria BC I walked 10,000 steps a day. Blew my doctor away. Took my time and listened to my body. Now back in western Canada it is too dangerous to walk in the ice and snow. Spring is still a while away. Any tips to help be living a live ni can manage would be appreciated. Do beets really work?

It depends on a number of things on what comes next. In hindsight i may have been tired, but did not notice. I am a person who just keeps moving. I ask for a hematologist following my breast cancer treatments as my blood numbers were not increasing finishing treatment but slowly decreasing. At the City of Hope, I was provided a doctor who suggested a bone marrow biopsy. He too found the MDS. I had the 5q deletion and a TP53 mutation in addition to another mutation. I was given a watch and wait or bone marrow transplant. I might also add that my MDS was Low-Medium. Based on Statistics for how many progresses to leukemia, and the fact my genetic test also diagnosed BRCA2, I thought for a minute and send BMT please. That day i was activated on the Bone Marrow registry.
I have read on this sight how people get transfusions or start with low dose chemo. One experience i have for fatigue was during my chemo treatments for breast cancer. I walked through 13 rounds of chemo, worked from home and was living life. The 13th round was Adriamycin and that got me. I was telling my sister on the phone how tired i was that day and she said that is not tired, you are fatigued, and you need to call City of Hope's triage line. I got my fiend to drop me off and got into the emergency room. I thought they would check me over and send me home. Blood test, chest scan and vitals. The Doctor in charge came in after an hour or so and i asked him if i would be going home soon. He said NO, your blood numbers are extremely low, you are going into the hospital. We will take care of you. I was in their 4 days as i also had a fever i was not aware of at 103. The nurses needed to treat me and order a blood infusion. I was diagnosed with Pancytopenia.
Fatigue needs to be reported to the medical team. I am sure there are suggestions. I would ask in those 3-month visits, what would be the next step in treatment. I was 63 when I had my bone marrow transplant.

I was diagnosed with MDS last year. My fatigue level never improved. I also have shortness of breath. I am now on my 3rd round of chemo treatment ( 5 days a week-first week of every month) so far no change.