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Prognosis for Metastasized NET

Neuroendocrine Tumors (NETs) | Last Active: Mar 20 11:16am | Replies (63)

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@patrick031621

I have been dealing with carcinoid tumors for 19 and a half years and am a long time survivor. I currently have about five fairly manageable ones in that they seem to be dormant as far as growth-- in my liver(2), mesentery (2) and heart(1). I take LAR sandostatin every four weeks for the last ten years. I try to be proactive, as I see it, in managing what I eat or drink, with a diet which I think hinders tumor growth. This is my suggestion to your husband--do not drink any soft drinks or fruit juice like you get in a store which are loaded with sugar. In fact avoid sugar as much as possible, no candy, no sugar cereal(they almost all have it except for shredded wheat). Secondly cut your calories and lose weight that way. This is what I do almost daily--Two bagels with cream cheese and one cup of coffee. For lunch a can of sardines. For dinner a salad of peppers, cucumbers, tomatoes and apple and then a casserole dish with either pieces of chicken or salmon with a certain amount of pasta or with a rice/ quinoa combination. I also eat a cooked serving of broccoli or cauliflower or Brussel sprouts.
I don't drink or smoke and although 6'2" have my weight at 140 which is manageable. I can't say this works for everyone as each individual is unique but I believe it has helped me. The diet is fairly dull but I like living. I nap when I need to which is probably not possible for your husband. AND I have established in my mind habits to not stress about anything ( I think stress aggravates things). I take the approach when a problem comes up to just deal with it and not spend anytime brooding about it or thinking about it--to use that cliche---"just do it." As to the diet which restricts calories, I know all cells , both cancer and normal, need food to grow and reproduce and cancer cells need more. Oh and I limit fat intake considerably (avoid French fries and things like fast food hamburgers or processed meats). If one has to add more food do a form of protein or crackers. Most individuals don't wants to live with this kind of diet and their is no scientific proof that it works but I will be dealing with it in February for 20 years and my tumors are just there. ( I did have six lymph node tumors in my intestine that had to be removed some years ago because they were causing intestinal blockage). It was after that I got serious and restrictive on my diet. No guarantees on this but my tumors have stayed dormant(I have regular MRIs) AND I have no problem functioning in daily life. I hope this is of some help--good luck and God bless.

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Replies to "I have been dealing with carcinoid tumors for 19 and a half years and am a..."

Thanks very much!!! The diet is similar for the patient I am helping.

Patrick, thank you so much for sharing. I have heard that sugar is cancers life line, so to speak. 6'2 and 140, wow there's not much room if you get sick to lose weight. It probably wouldn't hurt to add some pounds on though. But if you're diet works, great. You're right, with my husband still working it's hard for him not to stress bc of work. He does have his way of trying not to let it get to him. But he still has it daily. We are both dieting and have each lost over 30lbs. So we're heading in the right direction. I will let him know what you said so he can tweak some more things. Thank you for your advise. I hope you continue to do well.

10/11/24
Update---Nothing has changed since I wrote this except I have substituted eggs in the morning for the bagels. It is protein in the morning which again I believe is the best course for eating for carcinoid persons. I keep my calories still down and avoid sugar. Daily life is good and I feel as strong as ever. I keep my weight at 135 lbs.--It has been 21 years now, I am 77 and the tumors are still there like good renters of my body space.