Life Expectancy of MDS-1 Patients

Hi @hpjohnson85, welcome to Connect. MDS (myelodyplastic syndromes) is actually a group of blood cancers that keep your blood stem cells from maturing into healthy blood cells. There are different types and staging of MDS. You mentioned having MDS-1, which generally means, (from my understanding) that you have a lower risk of this developing or progressing into leukemia. Which is good! But you still may have some portion of your blood cells that aren’t functioning or reproducing properly.

So for example, if your red blood count is beginning to decrease causing you to become anemic, that could account for your overall fatigue, lack of energy and weakness. From my own experience, no matter how much you try to build strength and endurance, the lack of oxygen in circulation can really leave your leg muscles feeling like heavy weights. But it’s so important to keep moving and exercising. So do as much as you can daily and increasing intensity when you feel up to it. It’s also a good idea to alternate with days of lower intensity as a recovery period.

There’s not much you can do to increase your blood count on your own, though adding iron rich foods to the diet such as spinach or leafy greens, beef, turkey, sardines, beans, pumpkin seeds, dark chocolate, may help boost red blood cells. But you should check with your doctor before making any big changes in diet especially being on dialysis.

Your low risk MDS isn’t requiring any interventional treatment at this time but there are meds your doctor can prescribe to help increase red blood counts, if warranted, such as Epogen. Sometime patients with MDS also require an occasional blood transfusion to get the hemoglobin number back to a more normal level.

Do you know if your hemoglobin levels are decreasing since your original diagnosis?

I have MDS and went through an anemia treatment with the monoclonal antibody that extends the lifetime of the Red cells. (Sub Q shots in naval.) But it is a first time treatment. You can't use it if you've had a transfusion. Worked well. Had two, didn't need another.

Diet and ling term goals on recovery. I am going through similar with MDS and you need to eat healthy and at your age could take a year or more. I am 72

Can someone tell me what kind of gene mutations are the worst...can you go into remission with mutations

I am 77 and was diagnosed with MDS 10 months ago. A few failed treatments, now a new variation of a treatment, but I am transfusion dependent, needing one about every 2 weeks. I was told to be hopeful and just keep getting transfusions while different treatments are ongoing. A lot of weakness, feeling tired, legs like lead, but still trucking. Trying to stay positive despite no success to date, Nice to hear from others in similar situations.

I am 78 years old and have MDS….not enough mature red blood cells. I was officially diagnosed in March 2021 and my only treatment is now 2 bags of blood transfusion every 3 weeks. My latest haemoglobin reading was 68…very low. I do aqua aerobics 2 or 3 times a week. Actually I force myself to do this but it is amazing what you can do in water that you can’t do out of it. I live in Sydney Australia and always read with interest the treatments that are offered in the US. My haematologist told me I could live for many more years. Just hope she is right.

Is you hemoglobin 6.8 ?

@montauk I am doing well with a regimen of NPlate for 8 weeks and just stopped that and switched to Promacta. been 4 days so i wont comment yet

@bettersleep68
I have SF3B1 and have been told it is one of the better mutations wrt not advancing to AML. However it seems to be very familiar with iron overload which I am struggling with now. I have not done any study yet on other mutations.
Not really sure how to use this message board yet as well. Judy A.

Has anyone been on Venclexta for their MDS ? I am recently diagnosed ( April 2025 ) and on this drug plus injections of another drug for seven days at a time, then skip a week and again seven injections. I am 82 years old and restricted from a lot of activities due to weakness !