Welcome to the NETs Group! Come say hi.

Hi, Does anyone have any information on Growth hormone and how it affects NET'S and also not having a pituitary gland and having to take hormones orally and by injection? Thank You

yes I will thank you very much

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

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.

Yes. Post away!

my primary diet limitation is sugar as it feeds cancer. Also as I have had UC since 2018 I avoid nuts and anything corse it has been in remission for two years. My food based on immune boosring foods like puple potatoes dark meat chicken salmom olive oil peaches nectarines oranges bloeberries I have a smoothie every day with siggi iclandic skyr naturally 90% lactose free soy milk all the foods accorrding to studies that boos immune system so the body naturally fights cancer. have lost 32 lbs on purpose everything working well.again I do not have screting kind so my diet may not work for others. thank you Carol

That's an interesting question, Jhilbish. I wonder if @hopeful33250 or @khauert have some insight about the role of growth hormone and NETs.

Joni, can you elaborate a bit more? Are you concerned that needing to take hormones after the removal of the pituitary may be causing other issues?

My husband does not have a pituitary gland, it was removed about 22 years ago and he just has the stalk left. He has to take all hormones, Growth Hormone and Testosterone by injection and other's orally. That would be Levothyroxine and Cortisol. I was wondering if the Growth Hormone will make the tumors grow or affect them in any way? I keep reading about hormones being released into the blood and something about Serotonin? We had a Dr. say no that won't affect them, but that doesn't sit right with me? I was just wondering if anyone has any experience with this? Thank you all very much!
Joni

Joni, I'm following your logic and understand your concern. There are certain hormones that are known to be risk factors for tumor growth, such as estrogen for certain types of breast cancer. This doesn't mean that all hormones (natural or synthetic) cause cancerous tissue to grow.

I encourage you to repeat your concern to your husband's oncologist and ask him to take the time to explain how the hormones that your husband is taking work and why they don't affect tumor growth.

Colleen,
Thank you! I was concerned with the growth hormone because it does make his organs grow, he has gotten distended in the past etc., and I was wondering if this could affect tumors on the liver? He does need if to expand his diaphram for breathing.....I just want to thank all of you who have taken the time to answer all of our questions and concern's, we really appreciate all you do!! I am so happy to be a part of this lovely group of people. Thank you so much again God Bless all......