Hi Sharon,
Welcome to the Forum – I have found it to be a great help. I was diagnosed with MDS Del 5q about 7 years ago. I, too, was in the dark and ended up going to Moffitt Cancer Ctr in Tampa for help. Moffitt is the premier Cancer Ctr of Excellence for MDS so their team is knowledgeable re:MDS and the different options for treatment. My local oncologist who diagnosed me works in tangent with my Moffitt doc so I don’t have to travel to Tampa (about 2 hours) which is tremendously helpful.
I, also, have an inherited anemia called Thalassemia Minor which affects my RBC. So it is sort of a double whammy trying to boost my hemoglobin toward normal levels. I have been on Procrit injections given by my local onc. office every two weeks. I am fortunate because the Procrit which is an erythropoietin has been working for these 7 years which I am told is unusual. When the Procrit injections no longer work, I will have to start taking Revlimid (which is recommended for 5Q patients.
I don’t know where you live but if you are near a Center of Excellence for Cancer you should try to make an appt. Oncologists deal with all cancers and having a physician who knows about MDS or has many MDS patients is optimal.
There are treatments available and it is helpful to learn about MDS 5Q so you can be a good advocate for yourself. Ask questions, do research and don’t give up.