Thanks for reading my post – and I look forward to your responses.

You can find an overview of the signs and symptoms of MDS here:

http://www.mdsbeacon.com/resources/2009/05/01/signs-symptoms/

We also feature real life patient profiles, so you can compare your dad’s experience with our interviewees’ to get a sense of “the norm” with MDS. All of the patient profiles can be found here:

http://www.mdsbeacon.com/tag/patient-interview/

Finally, you and your dad may find the following article written by Dr. David Steensma on fatigue in MDS patients helpful:

http://www.mdsbeacon.com/news/2011/07/05/are-you-tired-a-frank-discussion-about-fatigue-in-patients-with-myelodysplastic-syndromes/

Please let us know if you need anymore information. Best wishes for a healthy 2012 to you and your dad.

My mother (who will be 76 on Sept. 9th) has had MDS for 5-6 years. We live 5 minutes away and are very close.
She has never been treated with medication, her blood counts have remained steady. Although when she gets ill they tend to go down a bit. Some times they actually improve quite a bit. But in general she has not progressed during this time. Her greatest issue is a total lack of immunity and needing to make sure to go to the Dr. the very first day she is starting to feel ill. To prevent a rapid progression from a minor illness to a major one. She has been given injections of Nupigen when ill to boost her immunity, during the last year, which has made all the difference!

I know it seems that you want her to do something to treat it but for some things often not treating them and watching for change is the best answer. that has been the case for her. but I understand it is not always easy no matter what is done or not done. It is concerning for the patient and the family. She has blood tests every other week, occasionally weekly or even monthly depending on the numbers.

It is a frightening thing for all but it is also a stressful illness. My mother has always been a very energetic person. She usually walks 1-2 miles a day and even works still but she needs to take breaks! Although we would both she rather not do. Her stress level affects her energy tremendously as does whether or not she is recovering from an illness. But in general she tires much more easily than she used to and smaller things cause stress than in the past. She may tend to be more stressed by MDS than other patients due to both of her parents dying from cancer unrelated forms) and her sister dying from Leukemia in 1994. Which was also unrelated to MDS.

She is an very early riser (5 ish) but has pretty much had it by 5 or 6 and goes to bed often by 7 although many nights she is up until 8:30 or even occasionally 10.

She has an exceptional team of Drs. (oncologist, pulmonologist, hematologist, etc.). I recently went with her to see her oncologist who said there is no reason that she can not live to be into her 90′s with proper monitoring and rapid treatment of illnesses.