Good morning,
My NET is Pancreas to Liver also to numerous to operate, some were over 10 centimeters. My first reaction was the same, let’s cut it out now and get it over with, but apparently it’s in our blood stream too so non surgical therapies are the only option for me and sounds like you.
Mine was found accidentally during surgery for a hernia, no symptoms. My original prognosis was 6 months, that was last April. After 3 hospitals and several doctors I’m at Dana Farber in Boston.
They immediately started me on chemotherapy, FlowFox 5FU for 6 months and a once a month shot of Octreotide. It worked. In the sense that at this point we are all buying time. The chemo isn’t fun, I didn’t get sick but had trouble eating. Everything had a metallic taste also had Neuropathy in my hands and feet.
In June my symptoms started to return, low blood sugar, Tumors on my Liver that were reduced to 4 cm were back to 10cm, but not all came back.
Now I’m on chemo pills, CapTem and octreotide and feeling better. I can tell it’s working sugers are normal.
The tumors on your liver may be why yours sugers are low, it was in my case. Try mixing cornstarch in your food. I mixed it with chocolate pudding and you can’t really taste it. Not a cure but it helps to stabilize your blood sugar.
Make sure your doctor is a NET specialist if not move on to someone else. It is shocking how little some doctors know about NET. I had a doctor in a world renowned hospital tell me last summer “don’t worry, liver failure is painless”. Would you like to participate in an end of life study? I won’t repeat what I said but I’m not ready to start digging the hole yet!
That’s when I literally crossed the street in Boston and went to Dana Farber.
Scans are an important component too. MRI’s will be more accurate than other imaging.
That’s all I can think of right now, that’s the broad strokes of my experience so far. Stay positive and keep fighting. Also important to remember that we all have different NET’s in different stages and types. What treatment works for one person my not work for others.
Good luck and best wishes