Welcome to the NETs Group! Come say hi.

Hi, thanks for your reply to my post. So sorry to hear that your husband's
pain is so severe. Perhaps the doctors can come up with a more effective treatment plan for pain control. It sounds as if he went to hospital for the back problem and they discovered NETs. This seems to be a common occurrence. When you speak with the doctor tomorrow, there are some things you can ask about. Find out if they know the primary site for the NETs, the liver or the pancreas. Did he have a Gallium 68 pet scan which is the best to find where NETs are and how many? Is your doctor someone who specializes in NETs? Are they planning other treatments besides the Sandostatin? Best of luck. Hope you get the information you need to go forward.
Lenora

Hi Colleen, Thanks for your response to my post. Thus far my response to the Octreotide has been mostly positive. I self-administered the short acting form for three wks right after the liver biopsy on 9/21/21 confirmed carcinoid cancer. It allowed me to eat without all the food drama- -nausea, vomiting, retching, gnawing epigastric pain and diarrhea. Now, I go for monthly shots and received the 3rd one on 12/29/21. The shots have caused painful local reactions resulting in lumps at the site. Ice packs immediately after have been helpful. For the past two wks I have experienced troublesome constipation. The plan for managing this includes: more veggies, stool softeners, prunes, senna teas, lots of water. Needed Miralax and Fleets oil enema to resolve most recent issue. Other than this, I tolerate it very well. Perhaps this info may help someone else.
Lenora

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

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

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

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

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, 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 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

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?