Confused when to start treatment

[vikasgoyal]

My father's hgb right now is at 7 and for some reason which is unknown his ferritin stands at 2500. He just had 2units of rbc transfusion 4months back.Rest of all his counts are normal and he feels perfectly fine. Different doctors are coming up with different opinions. Some say that he should start with lenadomide to keep a balance between his hgb levels and manage his ferritin. His personal doctor advices against it and he feels he does not require any treatment at this stage and can still be managed with blood transfusion and Exjade. We are really confused with what needs to be done. please send me your suggestions.

[DanL]

When to begin treatment really is the million dollar question, and comes down to some combination of what your doctors think and what you think as a patient. My current hematologist has basically said that we can start treatment at any time, but you will know when it makes sense. 1 transfusion every few months seems to be pretty good. My doctor seems to think that if you are generally feeling well and the disease does not seem to be progressing, that it is better to hold off on treatment due to the side effects. When you have signs or symptoms of a more aggressive disease, treatment makes more sense.

The high ferritin can be caused by transfusional iron overload, but may also be caused by hemolytic anemia or high iron consumption.

From the studies I have seen, revlimid is really good when an MDS patient has the del 5q change in their chromosomes, and works in about 25% - 30% of patients without this change.

Not sure if this helps.

[vikasgoyal]

Dan i definitely agree that quality of life is more important and with low risk MDS it's worth a wait before treatment can be inititated.

[vikasgoyal]

What i fail to understand is the reason why counts keep falling although the blast cells are 2% ? any idea?