Hi Lost,
I am so happy that I can be of help, even if it is minimal.
It really makes my day! I don't know which hospital you are treating with or what the protocols are at that hospital, but at the hospital my dad treats at, the patient or the caretakers are allowed to leave a message for the doctor and the doctor calls us back within 24 hours. If your husband's appointment is far along the way, you may want to try to contact him and get at least those questions above answered. I think those are probably the basic questions to ask, especially what type of MDS he has. Once that is figured out, I think you will be able to get a better feel for his condition and will be able to focus on the type of treatment that is geared towards for your husband's type of MDS.
As for my dad, his bone marrow biopsy showed that he is MDS/MPD. Within the MDS category, he is RCMD which is refractory cytopenia with multilineage dysplasia under the WHO classification which means that more than 1 of his stem lines are affected. (Under the FAB, he would be considered RA). For my dad, his rbc's are definetly affected and his wbc are showing left shifts (?? don't really know what that means) and his platelets are looking funky. However, fortunately for us, his wbc and platelets remain in the normal range. Under both FAB and WHO classifications, he is considered a low-risk MDS because he has no abnormal chromosomes nor any excess blasts. You should definetly find out whether or not your husband has any abnormal chromsomes. It appears that patients with a 5q deletion (type of chromsome abnormality) tend to have better responses to some drugs out there such as Vidaza or Remlivid. Plus, the statistics for life expectancy are better for those with a 5q deletion. But who's following the statistics anyway.
But as for the MPD, which is a myeloproliferative disease, he is considered a secondary MF (myelofibrosis). The reason he is classified as MPD is because although his wbc are in the normal range, his monocytes tend to be a little higher than normal. My dad's monocytes tend to range anywhere from 13-15%.
Everyone's MDS may be slightly different from someone else's and thus find that it is probably the most difficult and frustrating part of this disease. What may work for one may not work for another. But one of the best advice I was given is that knowledge is the best weapon against this disease. The more you learn the better equipped you will be. I think it is very important that you learn from your hematologist what type of MDS that your husband has.
That reminds me, I hope that your husband is treating with a hematologist who has some background in MDS. If not, you can go on the mds-foundation.org and look for a Center of Excellence in your local area. Although my father doesn't treat at a Center of Excellence, his hematologist came from the City of Hope , which is considered a Center of Excellence in CA, so it gives me a peace of mind.
Hope that helps. I will continue to hold you in my thoughts.