Grade 3, poorly differentiated duodenal NET metastasized to liver-

Posted by andre123 @andre123, Feb 27 3:58am

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

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

kevinmonroemi | @kevinmonroemi | Feb 27 5:38am

It’s really hard to say the right things! I can tell you the diagnosis is a tough one I’m sorry you are going through this I hope you have a good support system? It really helps. I can’t begin to understand what you are going through. I can relate though. I have Pancreatic primary with many functional inoperable liver tumors grade 2 well differentiated I too did not respond to chemo. I had high dose radiation to the liver with complications it took a long time to recover however the treatment worked. As hard as it is try to stay positive! We are fortunate there are still treatments available TACE is highly successful. Hang in there Andre! That’s all we can do

Teresa, Volunteer Mentor | @hopeful33250 | Feb 27 6:38am

Hello @andre123 and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. NETs is an unusual form of cancer and it helps to take the journey with others. As @kevinmonroemi said in his post above, I'm sorry you are going through this diagnosis and I hope you find the right treatment plan.

One of the most important guidelines for anyone dealing with NETs is finding a NET specialist for at least one consultation, especially at the beginning of this diagnosis. While many oncologists may have had some experience with NETs, a NET specialist will offer you the best treatment plan available. Mayo Clinic has NET specialists at all of the three Mayo locations. Here is a link with information about an appointment, http://mayocl.in/1mtmR63. If for any reason, you cannot be seen at Mayo, here is a listing of all NET specialists in the U.S. and worldwide. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

How are you feeling, @andre123? Was your NET discovered due to symptoms or was it an incidental finding?

Sherry | @bluebelle | Feb 28 11:42am

Hi, I’m so sorry to hear of your diagnosis. I was grade 2, stage 3 when I began this journey and it has since metastasized to my liver. I am considered stage 4 now and the tumors are growing faster. But, I just finished 4 Lutathera radiation treatments (which target the neuroendocrine cancer cells) in hopes of stopping any new growth. I had a scan a couple of weeks ago and there has been no new tumors or spread, and one of the liver tumors actually shrank a little. So, we’re hoping for more good scans in the future. Have you heard of this treatment? It’s fairly new and only been in the states since 2018 I believe. I pray you get the answers you need and the best treatment that works! Take good care!
Sherry