Neuroendocrine Carcinoma with Liver Metastasis

Appetite is so-so. Xeloda often causes weight gain, but I think this is mostly retained fluid.

Hello @qbandoc1 and welcome to the NETs support group Mayo Connect. It sounds like the treatment plan has been quite effective for you. You must be relieved! Going back to work on a limited basis must feel very good.

We have another member who has mentioned the Imfinzi treatment, here is a link where he posted about it,
https://connect.mayoclinic.org/comment/793209/
If you go to the Search icon at the top of your screen, you can enter the names of the other meds you mentioned, and it will provide you with posts that mention these medications.

How are you feeling now? Is your appetite, OK?

After 2 yrs of intermittent diarrhea, I was diagnosed with NET around Dec 1. It probably started in the appendix and spread to liver. I received 8 cycles of oxaliplatin, 5 FU and Imfinzy every 2 weeks. After 4 cycles I was clear by PET, thank goodness. Now i am on Imfinxy,once a month and Xeloda, an oral 5FU. I hope to go back to work in a week on a limited schedule. I don’t know how many people are getting this regimen, am curious to know.

Hello. My thoughts are with you. My husband has had 3 of 4 lutathera treatments (PRRT) his scans showed reduction after the first two treatments. His last treatment is in June but want you to know he is doing the best that I have seen in the two years of this process. His bloodwork is positive and his energy level is very good. His is also stage 4, but, insulinoma pancreatic origin, NET’s that metastasized to his liver. We are feeling optimistic. My best to you.

Hi Carrie! I am do sorry to hear your news and I completely empathize with your situation. I also have stage 4 neuroendocrine cancer which originated in my ilium (small intestines), spread into many lymph nodes, and has now metastasized to my liver. I had been on monthly Octreotide injections for the first 6 months and now with the latest PET scan revealing metastasis to my liver, I will be starting a relatively new treatment to the US called Lutathera which is a radiation treatment that specifically targets these neuroendocrine cancer cells. If you’re interested, please look it up as the results have been very successful especially for the symptoms. My doctor did not do chemo as he said it is generally not effective but I’m sure your doctor had his/her reasons and as we know, every case is different. Please don’t give up, please get a second opinion that specializes in NET cancer, and see what you think about this new treatment. Unfortunately, it is not offered everywhere and we just got it in the US a few years ago. I should start mine next month and I’m excited bc I believe this is our chance to survive:) I don’t know you, but I love you and I’m holding you in my prayers and in my heart❤️
Sherry

We won’t know until this Wednesday any additional info. But we are not happy with the dr we are seeing and, thx to you sharing the video, we are going to search out a specialist. I really was not aware of net specialty. Our dr here is not encouraging at all and we dread going to her month after month. I will keep you updated as we go, but I thank you so much for the info and encouragement in this group! I’m so glad I found you

@keeper3102
Hi Lucy! I’m sorry I just saw your message now. Yes I’ll add you to my prayer list too! How did your surgery go? You would be on post-op day 5 now I guess. I sure hope you’re in not too much pain. I just found out that my chemo is not working so I meet with my Oncologist on Friday (28th Oct) morning. I’m sufficiently terrified because it’s now begin to cause pain. In answer to your question regarding the hormones, I really don’t know. All I know is that I’m heeding the warnings I’ve read about to stay away from processed foods. However my doctor and team have told me to enjoy whatever I can enjoy. I am terminal and likely don’t have too much longer. I hate to leave my husband and teenage boys behind. It breaks my heart daily. I guess I’ll find out Friday if there’s anything else they can do for me. Surgery on my liver is out. I don’t qualify for a transplant so not sure if they have a small miracle for me or not. - Carrie