Anyone taking Cabometyx?

@haramir,

It would be a good idea for your brother to ask his oncologist about the best way to eat during his cancer treatment. A referral to a registered hospital dietitian would be very helpful. Has he considered this?

@hopeful33250 Thanks for the recommendation, but I was more interested in real life experiences / lessons learned from those who have or are going through this themselves. I suffer from pancreatitis and I share what I have learned on my own that I should/should not eat, etc. In my opinion, a dietician can provide guidance, but I have learned that people who have been through your specific health issue(s) are far more helpful.

@haramir

I found this helpful article about nutrition and NETs
- Eating Right with Neuroendocrine Tumors https://netrf.org/old-for-patients/living-with-nets/nutrition/

While I understand that you are looking for real-life experiences, here is an article from Mayo Clinic about the value of consulting with a registered dietitian when you are being treated for cancer: - How a Registered Dietitian Nutritionist (RDN) Can Help During and After Cancer Treatment https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-can-a-registered-dietitian-nutritionist-help-during-and-after-cancer-treatment/

You do not mention if your brother has had surgery for NETs. If he has, the discussion about eating after digestive tract surgery might also be helpful. Here is a link to that discussion, https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/

Would your brother be open to a referral for a dietitian consultation?

@hopeful33250 Thanks for the resource links. My brother’s NETS cancer has metastasized all over his body, including his bloodstream and bones. Surgery is not an option for him. He has been through a variety of treatment plans, but the latest treatment with Cabometyx 60mg is fairly new and his doctor is hopeful that it will give him more time with us. Previously, he was told he only had weeks (maybe months) left, but Cabometyx might increase that timeframe to a year(s). I can be very stubborn, but with good intentions when it comes to loved ones, so I research everything, ask lots of questions, fight hard, and pray to our God Almighty for more time with my brother. And, if I learn anything helpful that I can share with him and/or my sis-in-law, then I do. Nutrition do’s/dont’s is important to me because I know myself how long it took me to figure things out with pancreatitis. And, while I know that we may all differ in what we experience going through something like this, including what we eat, I always welcome any and all feedback from anyone who shares. So, thanks again for all of the resources. I actually had already researched “published” nutrition information/guidance for NETS patients and passed it on to my brother, but will see if any of these resources provide additional info. May God bless you!

@gesmone1 Good luck with your scan tomorrow.

Most of the things on the eat list are fine.
I am OK for tomato in salads or sandwiches.
Corn
cruciferous vegetables
Broccoli
cauliflower
cabbage
Brussel sprouts
These I can also eat without problems if well cooked.
Wheat
Dried beans
Red
Black
pinto
I find these OK in moderation. I also eat nuts, figs or dates occasionally without problems. I no longer drink alcohol (never did that much). Probably should quit caffeine too but it helps me get going. Since surgery and cabometyx I can't eat any spicy foods.