Beth,
If you haven't already done so I suggest that you get the
MDS information packet from the Aplastic Anemia & MDS International Foundation. It's targeted at patients and caregivers and is a good starting point for everyone who is dealing with this disease.
I also suggest that you phone the Foundation and ask what other information they can share with you since you are a medical professional. See their
Health Professionals page.
The treatment choice for your husband is ultimately a choice that you, your husband, and his doctor have to make, but if I was the patient, at age 65 with MDS-RAEB-1, I would definitely choose treatment over supportive care (transfusions) alone. Transfusions could get me past the immediate symptoms, but drug treatments would give me a chance to stop or reverse the disease progression. The first question I'd ask my doctor is how to choose between Dacogen and Vidaza and whether my MDS makes Revlimid a candidate treatment as well.
That's not to say that these drug treatments are easy, or always the best choice. They can set you back, with low counts or other side effects, before they improve things, and sometimes they don't help at all. This disease involves so many factors and can be so specific to an individual that doctors may have to try different dosages, schedules, or drugs to find a winning combination. That's why you want as much information as possible and to understand the tradeoffs as you make your treatment decisions. If insurance coverage and the costs of treatments are factors you have to weigh, don't be shy about asking about that too.
Is your husband in pretty good health overall, for his age? It's certainly a good sign that his MDS was able to stay under the radar for over 2 years. Even if they should have diagnosed it earlier, it tells me that his symptoms were not severe and the disease was progressing little if at all. But clearly his lack of energy and risk of bleeding have reached the point where you need to act.
To learn more about what you might face in the weeks and months ahead, you can use these forums to hear from or converse with patients who have been on Dacogen or who are treating MDS other ways. As a nurse you'll be able to understand technical articles that often just confuse us laypeople, for example
An update on the safety and efficacy of decitabine in the treatment of myelodysplastic syndromes. I suggest doing some of your own literature searches so you'll have a better handle on the medical aspects of MDS.
You may feel that you can't help your husband right now, but you have a lot of power already -- to research, to be his advocate, to participate in treatment decisions, and to work with his doctor. By asking questions at a site like this, you are already using that power to your husband's advantage.