Welcome to the NETs Group! Come say hi.

Hello @lenorahaston

Yes, I'm sure your comments about your diet may be helpful to others with this disorder. If we have new members, would you be willing to post to others?

If so, I will be glad to tag you in those posts.

Hi Theresa, My dietary journey with this disease has been long and troublesome, so I will try to make this answer as short as possible. Initially, I was being treated for GERD, gastritis etc. so I changed my eating habits....no late night eating, no spicy feeds, no wine, no fizzzy drinks,
no overeating and just avoiding anything that seemed to aggravate my condition.
These actions were helpful at first, but not for the long term. It became evident to me that it didn't matter what I ate. I had episodic stomach distress and diarrhea. I lost 10 lbs in 3 mos.
Since my diagnosis, I now know that the tumors were secreting lots of serotonin that was adversely affecting my digestive processes.
The Octreotide injections have helped tremendously with this problem. I tolerate most foods, but
still have to be cautious. I avoid acidic fruits, (especially grapes), tomatoes in any form, most nuts,
junk foods, highly sweetened foods (frosted cakes,cookies, frozen yogurt etc). I limit red meat, eating mostly chicken, turkey, fish). I've had to give up my all time favorite snack...popcorn. What a downer! I do my best to "stick to the plan" , but it isn't easy. However, I feel so much better when I do. So that's it in a nutshell. Hope it helps someone else.
Lenora

One day at a time, is the best thing any of us can do, @lenorahaston!
What diet limitations do you have right now? Any foods in particular that give you problems?

@cvb

You have some wonderful supports in place! Exercise, meditation, a healthy eating plan, and a good medical team. The counseling you are doing is also a wonderful support for you.

Will you keep in touch and let me know of your progress as you continue on this journey?

Hello,
Thanks for your reply and the invitation to attend the Support Group zoom meeting. Yes, I am concerned that my digestive symptoms have not abated as much as anticipated. Thankfully, the Octreotide injections have stopped the diarrhea which was the hallmark of my disease. Now, I have to be very cautious with my dietary habits because I have multiple midgut tumors which adversely affect digestion. As I stated, I am awaiting results of the next scan next month to see whether things are stabilizing or progressing. Until then, I take it one day at a time.
Lenora

TY I go to mayo in Jax and have been to the support group via our other email address. Dex wash for persons on afinitor to prevent mouthsores a common complaint and some people have real problems with it and will stop taking afinitor in my case mouth sores were not an issue and I found Dr. Mary Hogan about d/c dex after 8 weeks if no sores dr starr agreed with this. so thought would spread the word one less med. My next scan is March 15. I also exercize meditate and changed my eating habits after my sister in law a dr of pharmacology sent me a book Eat to beat disease by Dr Li which is great. Also in counseling for recent loss of family as well. Also go to accupuncture have a great person very supportive. thank you Carol

@cvb

I'm glad that you provided some more information about your diagnosis.

I would also like to invite you to a virtual NETs support group at Mayo, that is facilitated by a Mayo social worker, Michelle Walsh, @michellewalsh from the Jacksonville, FL campus. The meeting is held via Zoom on the first Thursday of each month beginning at 5:30 p.m. EST and usually continuing until 7 p.m. or so. Every other month there is a medical specialist who speaks on some aspect of treatment for NETs and on the in-between months, there is general group sharing. As you are relatively new to this diagnosis you will probably find it helpful and educational to learn and share with others.

You mentioned a Dex mouthwash. I'm not familiar with that. Could you discuss how it helps?

Do you have an appointment yet for the next scan at Mayo? Do you visit Mayo in Rochester, Minnesota, or another campus?

@lenorahaston

I would like to join the others in welcoming you to the NETs discussion on Mayo Clinic Connect. It is so good that you are reaching out to others with NETs, it helps to ease that "all alone" feeling that comes with a rare diagnosis like NETs.

It sounds like you have received some good information from reading the posts on this site. I would also like to invite you to a NETs support group that meets on Zoom. It is held on the first Thursday of each month, beginning at 5:30 EST, and originates from Mayo's Jacksonville campus.
It is led by a Mayo Clinic social worker, Michelle Walsh, @michellewalsh.

Closer to the time of the meeting a registration link will be provided and once you register, you will be sent the zoom link.

My experience with NETs has involved three surgeries of the upper digestive tract with no apparent metastasis at the present time. My only treatment has been surgery with no other therapies.

I can understand your concern if your symptoms continue to persist even after beginning the monthly injections. I'm guessing that you are experiencing carcinoid syndrome symptoms such as diarrhea, flushing, etc.

Is this the case?

yes was found in routine blood work with liver values off further testing revealed tumors in liver the biopsy and dx of lung to liver net as for vitamen b12 levels local onc and mayo onc not concerned however will do follow up tests