Welcome to the NETs Group! Come say hi.

@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?

I couch any comment we 'we are all different' and the treatment strategies are diverse and varied depending on specific circumstances. Having said that, in my wifes case, she had progressive liver disease which went from NED (no evidence of disease - nothing seen on scans) to a few, 10, 25, then 50 (small). Her Mayo Oncologist put her on 10 MG Afinitor (Everolimus) about 4 years ago and since then she has been completely stable. She gets scanned two times per year (MRI and then PET/MRI) with dotatate.

Hello Tom, Thanks for sharing your wife’s experience with NETs. You asked about my 5HIAA results. It was 29.5 mg/day. It should have been less than 10 to be within normal range. I recall that the GI specialist remarked how surprised he was that I had such extensive metastasis since the test results did not correlate with the findings. I don’t know how valid that comment was since his experience with the disease was so limited.
I am curious about the drug tx your wife is getting. Has it been helpful?

Thank You Colleen,
It was also a zoom meeting, so that didn't help......we live 4 and a half hours away. My husband has PNET. It started in the pancreas and spread to the liver and lymph nodes in the stomach. How the cancer was found was he went for a back MRI, (he has had 7 back surgeries.) they called him back for a CT scan and then we were told that he has over 20 lesions on his liver and a tumor in the tail of the pancreas. He also had 6-8 bulged disc's in his back. This was in August and he is on monthly Sandostatin. He just had a CT of the Abdomen and Pelvis and I thought we were going there for a copper PET scan. She said no, it was a CT scan so now we did not have to come to Moffitt. I also asked out GP to call in a back MRI as neither Moffitt nor Fl. cancer specialist's would not order the back scan? I was wondering if by any chance it had spread to the back?? The new CT scan also showed Patchy ground-glass opacity in his right lung, the report said most likely benign inflammatory. So as of now, his pain level is very high and wraps around stomach area to the back and under the ribs and down the left leg and pelvis. He is taking oxycodone 30mg. and then 20mg extended release one in morning and one at night. the 30 mg he takes every 3 to 4 hours. And most of the time it doesn't touch the pain. I am a little confused on the typical pain level for this cancer? Do some people have alot of pain, and some don't? I think when we see the MRI of the back we can see if the disc's changed and I have a back center with a Dr. on staff that makes a back brace for patient's. I think if we could get some of the back pain under control, it would be a great help. Again, thank you so much for all your help and this is a fabulous site! Thank you again.
Joni and Anthony

Hi Joni, it can be harder to understand people with masks on. Never be afraid to ask your doctor to repeat anything you're not sure you fully comprehended. A method I find helpful is the "talk back method". I'll say, "Let me see if I understood you correctly. You said that ______." Then I tell the doctor in my own words what I understood her to have said and/or meant.

The talk back method is really good because then the doctor can also see what gaps they may have left in their explanation or see if it was misinterpreted. Much more helpful that just getting them to repeat themselves. I do this when I accompany my mom to her appointments too, especially when I feel the doctor hasn't phrased things in non-medical terms.

I don't know your husband's pain or tumor, so I can't give you an accurate interpretation of what she said. But I think she may have meant that there may be something else going on in addition to the cancer that could be contributing to the pain. The MRI will give her a better picture.

What helps to alleviate the pain?

Thank you Lenora,
I have been trying to find a site where we could ask questions to people who actually have tis disease and I am so happy to have found you. We do need a back MRI as our Dr. said he should not have this amount of pain from the cancer. We need to get C/T scan results as well to see what if any the tumor's play a part in this. I almost felt like she was saying there should not be alot of pain associated with this cancer? What do find on the subject of pain and the patient's you talk to? It was also hard to hear as she had a mask on! She said perhaps the treatment might have to be changed, I have seen the targeted chemo/radiation and was wondering how people do with that? I know it is hard because it seems to affect every person differently. We are learning as we go but want to thank you again as so far we find your site to have a fantastic amount of info. on many different things, I wish we found you earlier. Again thank you and God Bless. Big prayers for all the warriors still in this fight! I am a 3x survivor and I always say, glove up, get in the ring and start to swing before the bell rings! Big hugs to you and everyone affected by this, have a beautiful day!
Joni and Anthony

Hi Joni,
Hope you were able to get more of your questions answered during your zoom call with the doctor. In regard to your comments about the liver NETs, it is possible to have several lesions (I have 6) and not have altered liver function studies. His tumors are grade one which means that the cancer cells are dividing slowly. That is a good thing.
Hope you have a good visit with the back specialist. It is important to get his pain under control.
Thanks for your prayers and well wishes. They are needed.
Lenora

Lenora,
Thank you so much! My husband is actually PNET I guess? It started in his pancreas, and they found lesions over 20 on his liver and the lymph nodes in his stomach. I am going to ask about lesion vs. tumor. He started the Sandostatin and had 5 monthly treatment's and we go for a "copper" PET scan. We are going to Moffitt cancer center in Tampa and the Dr. we have specializes in this cancer. With all of these lesions, he is still level one? I think they want to see how the Sandostatin has worked, then go from there? He is not a candidate for surgery and the spot on the pancreas is in the tail. Before his diagnosis I looked at bloodwork that had been done 4 month's apart and recent to the diagnosis and all AST, ALT, Bilirubin etc was in range and perfect? I said what the heck? According to his bloodwork everything hepatically makes it look NED no evidence of disease?? But when the diagnosis came in they explained it was rare, slow growing etc. I have alot of questions and thank you all, I really got alot of info. from your site! I will keep you posted! And I am bringing him to a back specialist who has a brace to maybe help the bulged discs.Thank you again. Praying for everyone!
Joni

Drinking plenty of water, prunes, oatmeal and magnesium citrate (Calm) helps me with stubborn constipation.

Thanks so much for your response. It is heartening to know that your wife has been living with this disease for nearly 7 yrs. I hope her quality of life is good. I have midgut stage 4 / grade 2 NETs. with mets as I described before. I have recently requested the actual numerical results for the 5HIAA . I know that it is somewhat predictive of prognosis. I was reluctant to ask because I wasn't
ready to deal with it at the time. However, I do recall that when the GI doctor told me it was abnormal; he was surprised that the number did not reflect the extensive amount of metastasis seen on the abd. CT.
I am curious to know when the the medications mentioned were added to your wife's treatment plan. I have been told that I may be a candidate for PRRT( Peptide Radioreceptor Therapy) in the form of Lutathera if my disease progresses. Right now it is more of a risk than a benefit. I had a cardiac echo which was normal. I am due for an abd CT at the end of February.
Thanks so much for the resources. Knowledge is power!
Lenora