@ThanksCancer Liver radio embolization destroyed right lobe of my liver instead of reducing metastasis. Went misdiagnosed for eight years stage four inoperable and so far the medical community has done much more harm than good. #Neuroendocrine#RareDisease
@CarcinoidNETs They don’t make it easy. Patient pays medical (except for drug), travel. Treatments, scans, labs must be done at trial location, typically out of state and not covered. Impossible when Clinical trial coordinator sabotages your Grant money. #NeuroendocrineCancer#RareDisease
Called EMS last weekend due to severe vomiting and dehydration. They arrived and said I needed to find a ride or call Uber. The last time I drove in that state I went up on the curb. In “emergency room “waiting room for 3 hours. #NeuroendocrineCancer#net#letstalkaboutnet
@fuzzymittens I went to see an interventional radiology just and he stated that my oncologist was bringing in a lot of business. Completely turned me off
@Russo4Ohio Telehealth Legislation Ohio 2014 needs to be revised due to technological advances and Covid. #Markey Cancer Center in KY needs to see me in person to give me a second opinion due to Ohio law. I have rare stage 4 cancer. Took 2 years to get approved by Medicaid.
@govtrack Telehealth Legislation Ohio 2014 needs to be revised due to technological advances and Covid. #Markey Cancer Center in KY stated they need to see me in person to give me a second opinion due to Ohio law. I have rare stage 4 cancer. 2 years to get approval by Medicaid