Danielle,
I'm glad Mark has a normal red cell count, although with a low white count he has a higher-than-normal risk of infections. Do you know if his platelets are normal?
A 9-of-10-matched sibling can certainly be a transplant donor. They might search the bone marrow registry anyway to see if there's a 10-of-10 unrelated donor available, but if so I'm not sure which donor they'd prefer.
Primary MDS, also called de novo MDS, is better than secondary MDS, which is statistically more likely to progress rapidly and more difficult to treat. (Secondary MDS means MDS that resulted from prior cancer treatment or environment exposures.)
Linda's mention of a trial brings up another consideration. There are many ongoing and upcoming clinical trials for MDS. When you participate in a trial you may receive a new treatment or variation on the standard treatment, usually a certain combination of drugs, that researches think shows promise. You get top-notch care, often for free. In other words, you have access to cutting-edge treatment with less of a track record. It could help where other treatments did not, or it could be another unsuccessful treatment. For some patients trials provide a road to remission and a viable alternative to a bone marrow transplant, although a transplant is still considered the only cure.
Each trial recruits a certain class of patients so it's a matching exercise to see what's available for a given patient, such as a 51-year-old MDS-RAEB1 patient who was not successful with Vidaza treatment (which doctors call azacitidine). I don't know if there's a trial that suits Mark or if you'd even be interested in the possibility. You probably don't even know yourself, until you learn more about the pros and cons. You can search for trials yourself at
clinicaltrials.gov.
Here is the list of open U.S. trials for MDS. You can read and learn about trials at the
Aplastic Anemia & MDS International Foundation and
National Library of Medicine websites, but I think the way to approach it is to do these two things:
- Ask Mark's doctor if a trial might make sense or if it should be ruled out. If he/she favors the idea, ask whether there's a specific trial to consider.
- Call the AA&MDSIF and speak to their clinical trials specialist directly. They can get you information more directly and sometimes know of trials not listed at clinicaltrials.gov.
Although Linda is right that it helps to take a deep breath, you should know that if Mark will go to transplant, the sooner you schedule it the better. If you, he, and his doctor decide it's the best option, delaying will prolong the chances of things getting worse. That's one of the disadvantages of a clinical trial: if it doesn't bring Mark's counts back or helps only temporarily then the delay may have increased the transplant risk. If it seems like a Catch-22, it is. The doctors make very educated recommendations, but it's a tough disease and there will still be unknowns. Sometimes a patient's opinion about the risks and tradeoffs is just as important as the doctor's expertise in making treatment decisions.
When it became clear that my wife needed a transplant, we wanted to delay it a few months, thinking it would let us better prepare ourselves and our family, but the doctor explained why we shouldn't wait. Like many Marrowforums users, I'm a caregiver, not somebody trained in medicine, but I share what I've learned from my own experiences.