Everyone who has replied has given you great information! A couple things from my experience...if they don't want you to go to the appointments, maybe you can get them a good tape recorder to take. It's amazing (especially in the beginning when all of this new and beyond awful) how many words medical words will be completely new and foreign, and two people will hear/get different things from the appointments. Having them recorded at least gives them/you the ability to research the jargon afterwards, enabling everyone to ask the right questions later. Depending on how open he is with discussing the appointments and/or your research, you may present various questions for him to ask himself. Is he fairly open about the illness and wanting to learn (many people, honestly, don't want to know and just want the doctors to guide them through the process...my dad was a researcher and wanted to be fully informed, as most people on this forum do. It helped us navigate the 3 1/2 years so much better, and as I've mentioned in other posts, I believe his tenacity helped his doctors provide the best treatment for him.)?
Next, I believe Procrit is used to stimulate red blood cell growth (Dad never received Procrit, though, so I can't speak too intelligently on it), whereas Vidaza is more to decrease the blasts. In many cases, Vidaza is used as a bridge to transplant (I believe the preferred magic number of blasts to go to transplant with a hope of success is less than 12%). In others, when transplant is not a viable option and decreasing blasts is of importance, Vidaza (azacitidine) or Dacogen (decitabine), are the general treatment choices. As with all treatment, though, for MDS and/or AML, patient responses are unknown and widely varied. Finding a happy medium/optimal time for treatment options is difficult, but important. If your Grandpa's blasts are not above 5%, they may not be considering Vidaza as a necessity yet (Vidaza, for those who respond, is effective for a limited time - what that time period is, no one knows. Can be 4 months for some, 28 cycles as for my dad, or longer for some. Once it becomes ineffective, the disease quickly takes over again...).
As also mentioned by others - a spreadsheet is key!!! Don't get too wrapped up in individual numbers (but be cognizant of them for sure), instead looking at trends. Remember, the doctors don't have all the information in front of them all the time, so your/your grandpa's knowledge of his numbers is very important.
I wouldn't (but again, I'm not a doctor and Dad's issues were never with his reds; others would know better about this than I) be too worried about iron overload at this point (I believe it takes quite a few transfusions before overload becomes a concern?).
And finally, as others have said...at 89, I really don't think transplant is an option. The survival statistics for transplant are fairly dismal (a word I really got tired of reading over the last several years). Dad, at 67, was in really good shape and, fortunately, did very well after transplant - relatively speaking. For him, it was an obvious choice - do it or die. And dying wasn't an option. He really didn't think, though, had he been is any less good of shape that he'd have faired okay (fast forward 3 years...even though he was still in good shape compared to a lot of his friends, he just couldn't make recover from induction chemo - similar to the chemo strength used at transplant...). Transplant is a very, very serious decision. It used to be (and still is in some parts of the world) mid-50s was the cutoff. Now it seems to be mid-70s.
Long story short...doctors will rarely give a time frame/prognosis (in my experience). You'll gather that information from your own research. I've learned to respect that - as soon as they say weeks, a patient will live years; as soon as they say years, a patient will live weeks. Each person is so different than the next, I really do feel for the doctors in deciding treatment options, etc...
Keep asking questions and we'll keep trying to answer. As you've already found, this forum is a lifeline to so many of us. I, too, hope to share and help others (without being too burdensome
) - as soooo many helped us!