Quote:
Originally Posted by jayc
He is very good for and with me because of his openness, concern and truthfulness. This is important to me because I was an RN in my younger years but still have to know about everything.
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Hi JayC from another North Carolinian!
I think it is great that you have a good relationship with your hematologist, and I think it's super you have been for second opinion. I have a great relationship with my local hematologist, as well. But there is no way I would take his word as the last word on my treatment. MDS is a rare disease. the number of true experts on it is very small. Even the experts at Duke and UNC are not the top experts in the field.
Unless there's more to your story than we have heard so far, your hematologist sounds way too pessimistic about treatment options for a young 72-year-old -- particularly if he's telling you you have only two years to live without treatment.
Some docs are transplanting folks your age. You might not want to go that route, which I respect. And you might not want to suffer the hit to your platelets or neutrophils that you're likely to get with Vidaza or Dacogen. sbk007 is very correct that some folks have hundreds of transfusions (I think I've had 95 units).
But still. If you're interested in living beyond your 75th birthday (and your loved ones would be interested in that, too), maybe you should arrange a trip to Tampa or Houston, or Baltimore, or Bethesda, or Cleveland, or Cambridge and see if you have options beyond those your local doc has suggested.
Take care!
Greg