Welcome to the NETs Group! Come say hi.

Just thought I would contact this group to say Hi. I was diagnosed with NETS about a year ago. Before that, I was diagnosed with MEN1, a condition whereby there are tumors on many of my hormone-producing glands—parathyroid, adrenal, pituitary and pancreas. I have had a number of surgeries to remove tumors on the parathyroid and adrenal, but the tumors on my pancreas have spread to my liver. Hence the PNET diagnosis. I have been injected with Lanreotide on a monthly basis since my PNET diagnosis and my quality of life has not changed, although I have one minor side effect which is manageable. Most recently my oncologist has suggested that I take Afinitor along with my injections. Side effects can become increasingly bothersome. I have so many questions and concerns, mostly regarding my quality of life. Has anyone out there had an experience with the Lanreotide-Afinitor combination and did you have serious side effects? And in general, how do you deal with this seemingly overwhelming diagnosis?

I would encourage everyone with a NETs diagnosis to join us in the following NETs support group originating from the Mayo facility in Jacksonville, FL. Here is the information. I do encourage you to register soon. This Zoom meeting is limited to 50 participants and last month there were 40 people registered.

This will be your opportunity to ASK the oncologist all of those questions that you would like answered.

Neuroendocrine Cancer Support Group

Thursday, February 3, 2022; 6 to 7:30 p.m. EST (note time change)
(4 to 5:30 p.m. MST)

Topic: Round Table Discussion
with Dr. Mohamad Bassam Sonbol, M.D.
Oncology Mayo Clinic, Arizona

Location: Virtual (Zoom)

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

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......

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.

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

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 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

Yes. Post away!

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