My friend was admitted to the hospital in October after having a horrible September. Her O2 levels were low, she was dehydrated etc. Her oncologist was going to go to every 21 days because her symptoms had worsened. However, after being misdiagnosed by cardiologist, she was finally airlifted to MD Anderson a week later and underwent open heart surgery for her heart valves. Her injection in September had been administered too shallow, so basically it did not control the symptoms.
So now we joke that not only does she get to recover from major heart surgery, she still has stage IV cancer! We can joke because she is doing incredibly well. I saw her yesterday when she came for her injection. She is now on Xermolo and feels great, looks great! She enjoyed Christmas with all her family and is back at work full time. She has learned a lot— being proactive does not mean you are being negative, you can still have a positive attitude! In order to treat this horrible zebra, the doctors have to know “your stripes”! Also, just because you have checkups at a wonderful facility, it MUST be interdisciplinary, and because you are a zebra, all your docs must be familiar with NETS! This is a long update— but maybe just maybe there is somebody out there searching, trying to put some pieces together and this will help!