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Grade 3, poorly differentiated duodenal NET metastasized to liver-
3 years ago, I had surgery to remove the duodenal NET diagnosed as grade 3 and poorly differentiated. After recovering from surgery, I had 6 cycles of cisplatin/ etoposide chemotherapy, unfortunately it did not work for me. Then I started on BRAF inhibitors, dabrafenib and trametinib, and the cancer stabilized. However, the last 2 PET CT scans showed the cancer has metastasized to the liver and growing fast.
The options presented to me are:
1) TACE ( I am not told of the type of chemo agent to be applied yet);
2) cabozantinib;
3) CAPTEM;
4) CAPOX
I am quite overwhelmed by the options presented before me, bearing in mind my type of cancer is very rare and from my understanding, treatment protocols are limited.
Appreciate for any feedbacks to shine some light on my next treatment going forward.
Thank you
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I am curious as to your symptoms. I have stage 4?carcinoid metastasis in the liver and am struggling with gastritis. My bile keeps making its way into my stomach and nobody can make sense of the cause. I wonder if there aren’t some cancer cells in there that are not yet significant enough to show up on scans.
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1 ReactionI just finished my first 2 week cycle of CAPTEM a week ago and to start my second cycle after a 2 week break. It is heartening and inspiring for me to note that it is working for you. I am hopeful your follow up scan will show it is still working for you. Thanks for sharing
Thanks for the kind thoughts. My scans were good last week. No growth. Everything was stable. We are moving forward with scans around every six months. Folks frequently ask if I am afraid that the capecitabine maintenance will stop working. My honest answer is that I don't think about it. I can only work with the facts of my treatment and results. It is working, so I will stay the course. I know the mean for the long term efficacy is about 2 years for the CAPTEM/capecitabine treatment. I started CAPTEM over 2.5 years ago. I have done over 30 cycles combined. But my quite articulate doctor stating things quite simply, "If it ain't broke, don't fix it." This cancer has taught me one thing; there is no normal. Sometimes you just have to roll with it. This time, it appears that I might have caught a break. YAY!!!!
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1 ReactionI didn't know if you were directing your question at me, so I will respond anyway. I have never been diagnosed with gastritis. But, I looked it up on Mayo's website and it gave me the following:
Gastritis doesn't always cause symptoms. When it does, the symptoms of gastritis may include:
Gnawing or burning ache or pain, called indigestion, in your upper belly. This feeling may become either worse or better after eating.
Nausea.
Vomiting.
A feeling of fullness in your upper abdomen after eating.
Yes, I had all of these symptoms. I still take omeprazole every morning to help with stomach acid. When I stopped taking it, I started getting indigestion again. I started it back up. Please let me know, if you have any other questions.