rondeb111,
Your Dad is a real survivor! I'm sorry to hear he's gone through so much.
What should you expect? First off, some predictable symptoms if his blood counts are low. Ask for his "CBC" (complete blood count) report to see what the numbers tell you; they should indicate which counts are low or in the normal range. If he has a low white count you'll want to take any precautions you can against the infections he's prone to, and react quickly when they occur.
Chromosome problems are part of the nature of MDS. The specific chromosomal abnormalities can be interpreted as relatively better or worse but at this stage the most important result is that they probably confirm the diagnosis.
MDS is not a disease that can be dealt with easily or that will have much chance of disappearing if untreated, although some patients are able to live with lower-than-normal blood counts if they aren't critically low.
Even expert doctors have trouble predicting life expectancy for a patient with a bone marrow failure disease. They can tell you statistics about groups of patients in years past, which tend to be skewed toward the pessimistic side. With your Dad's complicated history, I doubt that the patients and caregivers in these forums can make predictions that could help you.
I can tell you some of the factors that aren't in his favor:
- Among the MDS subtypes, RAEB-2 is on the most serious end of the scale.
- MDS that results from previous cancer treatments, which may be the case here, is more likely to progress and harder to treat than MDS not associates with previous cancer.
- Your Dad's other health problems may prevent him from being able to tolerate aggressive treatment.
I can also tell you what your Dad has going for him:
- The availability of excellent physicians with MDS experience, if you seek them out. For example, the Siteman Cancer Center in St. Louis is known to be excellent.
- The improvements that are constantly being made in understanding and treating MDS.
- The availability of clinical trials that gives patients access to cutting edge treatments at little or no cost.
- You! I can't say enough about how important it is to have the support of a family member who is seeking out information and helping decide what to do. Having you on his team, along with his doctors, is a huge plus.
You can learn more about the basics of MDS, including treatment choices, by reading the
information about MDS here at Marrowforums, by getting the
information packet from the Aplastic Anemia & MDS International Foundation, and by reading about MDS at other websites. It would be very helpful for you to go to your Dad's doctor's appointments with him, if you can, since you'll be able to ask questions directly and get advice that's specific to your Dad's situation.