Just diagnosed: Metastatic NETs. Treatment?

Hey @helloitsme, thank you for your kind thoughts!
Your friend’s success story was great to hear, and is certainly a reason for you to choose to go there.
Looking forward to hearing your success story.

@helloitsme, I am in the process of trying to schedule a scan (Gallium 68) as my last one was 14 months ago. It’s a bit stressful as it’s been so long but I’m just trying to focus on the fact I feel good (an hour at the gym today, 3 miles on the treadmill yesterday). Fingers crossed on this.
As for moving doctors, I mailed a letter to my former doctor today saying I was notifying him I would no longer be seeking treatment there, thanked him for his help and support over the last 4 years, and that I know he and the staff have very challenging jobs. Short and to the point and I felt better for having done it. No reason to go into my grievances, but just to move on.
So, I know there’s likely going to be a next step in my treatment, just don’t know yet what it’ll be. It’ll be a new “challenge”. But I viewed hitting 3 miles on the treadmill a challenge, and I’ve met it. Hum, guess I need to set a new challenge there.
Keep us informed please.

We all got you in this battle vs. NET. Let us know how we can help! Information is a very valuable commodity, with NET, as you are probably aware now, NET is very rare.
Surround yourself with a great multi-disclipinary team, and you can beat this! Good luck, we got this!

How often do you get Lanreotide?

@lady2 and welcome to the NETs discussion on Mayo Clinic Connect. I see that you have posted to @mimmy regarding Lanreotide treatment. Has this treatment been suggested for you as well?

As you are new to this group, would you be comfortable sharing about your experience with NETS? Have you recently been diagnosed?

I get Lanreotide once a month.

@patrick031621 - I have similar conditions - surgery to remove huge pancreatic NET, metastastized to liver. I am on my third Lanreotide injection today. Could you share your specific diet, please? I am eating mostly plant protein ( lentils, beans, chickpes). Blueberries, apples, pears, a little bit green salad and peeled cucumber slices. Fish and chicken twice a week.
Thank you! And God be with you and us all!

You have really found a way to successfully live with NETs, @patrick031621. I appreciate you sharing the many ways you have adjusted your lifestyle to deal with this disorder. You have displayed an attitude that reflects the ability to adjust to new circumstances.

As my first surgery for NETs was in 2003, I am a 20-year survivor. It has not been easy, and my lifestyle (especially eating) has needed adjustments to accommodate for a slow digestive process as well as diminished energy level. Flexibility is a key and the ability to enjoy life in spite of changes is important.

It is challenging at first, but with time (and the ability to change) life can be better. Congratulations on the good results you have had with your treatment. I agree with your oncologist that you have been blessed.

Here is my diet which covers almost every day of the year.

Breakfast---a cup of coffee (no sugar) and two or three toasted bagels with whipped cream cheese on them. Sometimes I now only have coffee.
Generally little eating after that except perhaps a can of sardines in olive oil at about 1:00 p.m. Occasionally will substitute some unsalted peanuts.
Outside of the cup of morning coffee, I drink nothing else except sips of water frequently through the day. I never drink a whole glass of water as it seems to trigger diarrhea.
Evening meal: a large and I do mean large salad of cucumbers, grape tomatoes, apple and a colored pepper. I put vinegar on my salad in large amounts. I have a large helping of a meal that has whole grain pasta, Classico Cheese Alfredo sauce, sliced mushrooms and a third of a can of salmon or a similar quantity of chicken. With the chicken being the meat we add carrots and celery. We make a large pot of each either with the salmon or the chicken and I eat each three days in a row. in other words we alternate the base meat every three days. I finish with a serving of either cauliflower, broccoli or Brussel sprouts. I will later in the evening eat a few peanuts.

I take four vitamins--a Centrum silver, 4000 IUs of D3, 250mcg of B12 and 325mg of Ferrous Sulfate.

Not a lot of calories for sure but I function very well gardening walking about three miles a day with my dogs. I will nap for an hour and a half in the afternoon. my body has adjusted to this regimen. I eat no candy or sweets of any kind. I absolutely don't ever have a soft drink or fruit juice or milk despite my other dairy. I eat no processed foods. I occasionally will eat other seafoods as shrimp.
This may sound very dull but fortunately for me I have never been that big on sweets although I did used to love when much younger a Coke and a Hershey's chocolate bar. What i have learned is the body adjusts and after a while the thought of some of the "bad " things one used to eat are totally unappealing.
And I do get an octreotide injection every four weeks.
There is no way of knowing which of these things is most effective but I do believe strongly in few calories, plant based diet and seafood. Oh and I rarely have any alcohol. In the last five months I have had one glass of wine (wife's birthday), one glass of champagne (New Year's) and a small margarita (our anniversary). That is it. God bless you and help you. Oh, one last thing--I have worked exceedingly hard to not let anything stress me, even this situation. I have learned to roll through life now as if I am floating on a raft down a calm river, despite this health issue. I think letting oneself get stressed hurts our condition.

Hi there! Your diet doesn't sound dull to me at all! I believe this diet or one similar is totally doable for me as well. I'm not a big eater to begin with and have a hard time keeping weight on, so I may have to add a few more calories to this diet but it is a wonderful base diet. Thank you for that! The hardest part for me would be to cut out sugar...I love my chocolate! But I've heard that cancer absolutely loves sugar, so I have been trying to cut down gradually...it's hard! ;-D
I love how you described dealing with stress, "floating on a raft down a calm river"! I will have to learn to think like you as I am a bit of a worry wart.
I truly believe that stress is part of what caused my cancer. I watched my big brother slowly die over the last 2 years, and I was with him the last 3 weeks of his life. He had brain cancer and passed away at age 67 last June. That, along with helping my Mama and helping her to deal with her grief has really taken a toll on me. She has been hospitalized 3 times since his death. The doctors say that stress is causing her body to shut down. I thought my symptoms (diarrhea only) were from the stress of all that, so it really was a shock to find out about my cancer.
I will stop rambling now. Thank you for your note...I truly got a lot out of it.
PS...do you have any side effects from the octreotide?