Thanks for all your encouraging words, they come at a good time. I will keep you in my prayers, as I do for all Carcinoid patients
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I too am a new to NETS, just being diagnosed in late May. My Carcinoid cancer attacked my heart so I am preparing for open heart surgery in 3 weeks to replace 2 valves. I had my injections of Sandostatin last Thursday and am feeling much better now. My liver is full also.
I bought the book “But You Look So Good” as well. The beginning is very informative and resourceful, the personal stories reinforce the importance to stay focused, and how staying positive is the name of the game. We all have doubtful days, but we do need to learn to quickly shake it off and find our smiles.
Best of luck to you, stay strong, ask questions, and find a doctor you really trust.
At present we are trying to calm down the Carcinoid liver cancer by doing a 20 CC injection of Sandostatin in each of the upper leg/hip area. This is important to get the cancer calm as I have developed carcinoid heart disease too. On Sept 21 I will have open heart surgery to replace the 2 valves on the right side of my heart. My surgery will be at Mayo Rochester.
As for my cancer, most of my symptoms are gone, however, usually one week prior to my injections I get a low grade fever, chills, bloating and lower abdominal discomfort from my swollen liver. The injections are painful at first as I’ve gotten quite thin with little muscle to inject into., but with rest and then walking it off it’s better.
As for my heart, I am more short of breath and simply cannot do stairs well at all. Once I am strong enough after surgery, the oncologists will take over and be more aggressive with treatments. I am getting tissue (animal) valves. So we don’t want the cancer to attack the new valves.
Stay calm, positive, and take one day at a time.
thank you for your words of encouragement, my appointments begin at Mayo on the 20th with the cardiologist and next week with the onlcology department. So your reply to me came with perfect timing. By all of the good things i hear, Mayo is an excellent place to be. Again, thank you so much.
I learned of my carcinoid in May,2017; After having symptoms of severe exhaustion, diarrhea, no appetite, weight loss, brain fog, and ankle swelling slowly getting worse over a 2 year period. I was diagnosed after having swollen ankles and calves, which they discovered a heart murmur. I was transferred from my my small outstate hospital to the cities. This is where I was diagnosed with Carcinoid Heart Disease, which carcinoid cancer in some patients attacks the right side of your heart. I am currently having an injection of sandostatin every 28 days. This week I have appointments at Rochester Mayo with cardiologists and oncologists. I have been told the goal is to get the cancer under control before repairing the heart valve. Looking forward to my appointments with mixed emotions.