Connect
Prognosis for Metastasized NET
My husband was dx with metastasized NETs originating in the small intestine 3 years ago. He's been on Sandostatin shot monthly since dx. Up until his most recent pet scan last week the shot seemed to be holding the tumors "at bay". This recent scan showed growth of the 3 large tumors in his liver to have grown and the tumors have also spread to his other lobe. His oncologist said "the next line of treatment would be a chemo pill called Afinitor but since you're not having any carcinoid symtoms that is your choice as to if you wanted to take it". Then he said, "there's nothing else we can do". I asked him about surgery on the liver "debulking" and he said "bc is in the other lobe and he's having no symtoms there's no reason for surgery" and he went on to say "the liver only needs 15% to function". After much research is clear that his once slow growing tumors have moved into a faster growing disease. I can see changes in him, that being more trios to the bathroom with diarrhea and he's more tired lately. But for the most part he still goes to work and dies his normal activities. Bc I don't feel like we're getting straight answers from his Oncologist i would like a straight answer. Understanding that whatever is said is not in stone, and generalized. I know there is no cure, I know their treatment was to try to keep the tumors from growing and spreading but we are at a crossroads now where the shot isn't working. He has heart disease, with 3 stents, middle age, overweight and works in a high stress environment. All things that don't help with his disease. From everthing I've read approx 17% make it to the 5 year mark. I need some insight as to what to expect since he doesn't want surgery or to take the chemo pill. Will he start to decline? Am I correct in what I've read in his prognosis? Is he at the advanced growth stage? I'm a person who NEEDS to know and the Oncologist saying , that's all we can do says a lot. Any advise would be helpful. Thanks.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
Thanks very much!!! The diet is similar for the patient I am helping.
View Translation
I almost forgot. I don't drink milk either, only a dab of cream in my coffee. Thanks for your reply.
-
Like -
Helpful -
Hug
1 ReactionI had a tumor removed from the rectum but never checked the cysts on many of my organs including brain, now I have on my neura foramina spine and fibroids 😓 I honestly feel very sick but no biopsy is being considered even with changes on my bone scan…
-
Like -
Helpful -
Hug
1 ReactionPatrick, 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.
-
Like -
Helpful -
Hug
1 ReactionThank you for your reply and comment. If I might I would like to share a few more thoughts and facts. I am convinced that sugar restriction is good ( as you notice I also restrict fats) but I am convinced even more so that calorie restriction is the most helpful. It is hard to get in that habit. I weighed 206 a number of years ago and brought my weight down through exercise and this diet. I will admit that I am basically skin and bones and muscle but it hasn't affected my activity levels. I walk two or more miles a day usually accompanied by one of my dogs on a leash. As I lost weight I found my need for food diminished to the point where I never felt hungry but still retain an appetite. I surmise that we have an ideal base weight that is an individual thing which we can reach. I stopped losing weight some months ago and that has stabilized. Because of our food availability, we may think we need more than we do. My testing numbers when I started this journey were terrible but now they are very good, much better than I ever expected. I am now 76 years old and surprised I have gotten there. ( by the way, not carrying extra weight is great for one's knees). I wish your husband all the best on this as at times it can be very discouraging. And as I have mentioned each of us is an individual case but this has worked for me and I thought I would share this "case."
-
Like -
Helpful -
Hug
2 Reactions@patrick031621
Your journey with NETs is remarkable. You've really adjusted with a good eating plan, and you have been proactive in seeking out treatments that have helped. You also offer a sense of optimism and hope to others just beginning this journey with NETs. I look forward to your posts!
Are there any particular problems over the last 19 years that have been difficult to overcome?
Patrick,
I would like to know more about your regimen and diet.
I was diagnosed this last month with carcinoid tumor at junction of small/large intestine. With biopsy I got 2nd opinion. PET done showing multiple lesions in liver.
I saw Oncologist a week ago, he staged at 4 and said Grade 1. He said tumor has metastasized to liver. I began Somatuline Depot injection that day.
My goal is to do all I can to stave off symptoms with diet and exercise and Hopeful said I should contact you for your comment.
I should mention I am 5’7” @ 145# 77 yrs. and am type 2 diabetic (well controlled).
I have looked at the Carcinoid Syndrome Diet and incorporated some foods mentioned in the hope of alleviating foods that would irritate.
Will you share your thoughts with me?
Best to you…
-
Like -
Helpful -
Hug
1 ReactionHi. Good to hear from you. I will try to help. What I have done has worked for me. It has come about through trial and error, and logic combined with my biological knowledge which of course has its limits. Before going into what I do eat or my diet, here is what I don’t eat. I eat no red meat like pork or beef and generally few eggs (maybe two a month on a Sunday). I don’t eat out whether fast food or at restaurants. I don’t eat pizza or any pre-prepared foods you can buy in grocery stores. They all have too much either fat, salt, sugar and calories. Dairy is a bit problematic. I don’t drink milk but have a dab of cream in my coffee. I don’t eat cheese but use a cheese sauce in one of my meals. I don’t eat ice cream except as a rare treat like on my birthday.
I don’t do any soft drinks or fruit juices and no citrus except what is in a tomato. I rarely have fruit, maybe a few plums during the summer.
What I do. I believe, when you have cancer of any sort, on calorie restriction as primary and also as much as possible the avoidance of sugar whether high fructose or refined sugar. I also avoid products with artificial sweeteners. I believed in what is essentially a plant based diet (with the addition of either chicken or salmon in small quantities).
My day in diet—
I begin each morning with a walk taking a dog with me. This is before I eat or drink anything. I then toast three bagels and put some cream cheese on them and also have a cup a coffee with a little cream. I can’t give up my coffee but it probably is not the best. If I have an additional cup later I will need to visit the rest room shortly after. I never have a third cup. About 2:00 p.m. I have either a can of sardines or a few slices of bread and that is it until dinner at about 6:00 p.m. My meal then is a salad and a main course plus a cooked vegetable.
The salad is always a colored pepper, cucumber, apple and some grape tomatoes (some people have trouble with tomatoes but I don’t) on which I pour on some apple cider vinegar but no prepared or store-bought salad dressing or any salt or pepper. We have two basic meals that my wife and I share, each for three days as she makes enough for three days between us. That means that each day I get a sixth of each of these recipes
The one is: two cups of rice(red, white brown and wild combination) with a half cup of barley, three chicken breasts, a half bag of frozen carrots, a jar of mushrooms, two to three ribs of cut up celery, a can of either cream of chicken, or mushroom or celery soup. Sprinkle some Mrs Dash(no salt or other spices) and she uses chicken broth and water to cook the rice. She cuts up a pepper into it and cooks it all in a crock pot.
The other meal which is again three days’ worth for both of us is:
Two cans of salmon with the liquid from the can but no skin, a pound of whole grain pasta, a jar of mushrooms, a can of celery soup, some chicken broth, a cheese Alfredo sauce, a half of a cup of sour crèam. Some Mrs Dash.
As I mentioned above, on each day I get a sixth of one of these meals.
Also daily I eat a serving of either broccoli, cauliflower or Brussel sprouts. I pour apple cider vinegar on them. I believe in vinegar as a health help.
That is basically it. As you can see. Very few calories and actually a very boring diet.
I do take a few vitamins. D3 4000 IU, B12 250 mcg, a Centrum silver and Ferrous Sulfate 325 mg. I don’t know if any of them help anything really except for the Ferrous Sulfate as my lack of meat I assume keeps me from having my hemoglobin kept at an acceptable level and the Ferrous sulfate keeps it up where it needs to be.
Two non-dietary items -I have been taking an LAR octreotide injection every four weeks for 10 years—I assume it helps but you never know about cause and effect.
The other thing is that the two goals of a carcinoid patient are to limit release of hormones and the spread of the tumors. I believe one thing that helps is to control your stress levels which ideally means to try to not stress about things at all. I know that stress causes the release of hormones and so a lot of avoiding stress means changing habits and attitudes. I have had to work on that for a few years. I found it was about changing my perspective. I don’t stress on anything even this illness. Everyone has problems that come up and rather than fret about them I either do something about them or accept and live with them by adjusting or adapting. I hope I don’t sound preachy here and don’t mean to, but I just avoid, at this at age especially, stress and worry.
As I stated before I am about to get to the 20 year mark and I still have the tumors in three places but they sort of just lie there. My lab numbers on my blood work have been great especially considering where I started out 20 years ago. No guarantees that things will stay that way but for now my life is pretty well in good shape.
I hope this helps and isn’t too much info.
-
Like -
Helpful -
Hug
6 ReactionsHello again. I responded on diet to the man who contacted you. Your question is interesting. I would say the hardest thing or problem was to manage my stress levels. I believe that stress control is critical to a carcinoid patient. Fortunately, NETs are slow growing so one has time. It takes changes in life-long habits and attitudes to get stress free. I think of it as similar for individuals who go to AA meetings who have the philosophy of don’t take a drink—for us that means don’t stress. AND of course, it is a daily commitment. Stress means not getting excited not over bad things that happen but also good things. I try to keep an even keel on both. Stress activates your hormone levels as you know and that is not good for us. Don’t want to bore you with all the things or habits I have changed except for these general points. I am religious which I know many are not but that means time to pray to God. I don’t have prayers of petition normally , or ask for anything but rather I begin each day when I wake up saying thank you for today. Like this morning . “Thank you for November 22nd and allowing me to wake up.” Secondly I try not to think at all about myself, stay outside of myself in focus. I start with my dogs, then the outside world in my early morning walk, usually spotting something I have never seen or thought of before.
I should stop now on this to avoid sounding preachy. But there are so many tricks of perspective that one can do to eliminate stress that I have had to work on. New habits ,etc…
-
Like -
Helpful -
Hug
4 ReactionsI am grateful for your willingness to help.