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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.Marjory BegleyParticipant
Welcome to a great forum. I was diagnosed over 6 yrs ago with MDS dele 5q. I am fortunate to be followed by premiere Oncologist at Moffitt Cancer Ctr in Tampa, FL. I have been receiving injections of Procrit usually every two weeks for over 6 years. Usually Procrit injections do not continue to help for this length of time I have been told. So far my HGB varies from 9.3 to upper lls. Yes, tiredness and fatigue go hand and hand with this disease. When my HGB is even in the 11s I can become quite fatigued and sluggish. I have learned to take it easy when I am in my “down” period and accept I am limited in what I can do. I am 77 yo and am currently experiencing brain “fog” and extreme fatigue. Hopefully, I will respond to my Procrit injections but it usually takes up to a month to feel more normal. This is a chronic disease and I have learned to listen to my body and have become an advocate for myself. My local Oncologist (Not my Tampa physician) is receptive to following my Moffitt Onc. recommendation. You need to make sure you have a good relationship with your doctors and listen to your body. Even when my HGB is in the 11s I am told I should be feeling better but my body tells me otherwise. So I have learned to listen to my body and I go with how I am feeling. You know your body so you must listen to it. If you feel sluggish, tired and have little energy, take care of yourself and rest.