Anyone still have pancreas pain while taking Lanteotide?

I am still taking them. I was just concerned about the things I was experiencing and wondering if it was related to the tumors or the shot and whether the pain is somewhat expected. Just wanted to see if anyone else maybe had experienced the same. I am still very new to this diagnosis and treatment. I appreciate all of the input.

Not sure about pain never really had any and have the same thing. I do have pancreatitis on occasion which is painful. Pancreatitis caused most likely from eating the wrong thing or Lanreotide . Not really sure Lanreotide works only did one 6 month round. Seems like the slow tumor growth reversed on it though, not really helpful. I think eating right, exercising, and lowering stress can definitely help with slowing growth down. It’s just scary seeing or hearing about so many individuals dying of so many different cancers and it seems as if as soon as you hear about them taking all sorts of drugs or radiation they go downhill faster not sure what the solution is, but there are so many side effects from all that modern medicine throws at these illnesses. Kinda like they just do what they know and keep poking at it, but it still may not make a big difference. Not sure if some of it is not more harmful …really don’t know. Differently have a specialist and be an advocate for yourself learn all you can. I have seen so much misinformation, misdirection, and misdiagnosis out there.
Mostly because this is a rare disease and it is misdiagnosed often.

So, are you saying thst the Lanreotide increased the growth of the tumor in your case?

I was diagnosed with Carcinoid tumor in Feb 2023. My Chromogranin A blood count had hit a high of 2480 by February. My PET scan did not find any large tumors, but the pain, flushing, and other symptoms were very evident. I also have Pancreas Divisium, a genetic disorder, which is also rare that can cause a great deal of pain if eating too much fat, etc. I receive a Lanreotide injection every three weeks due to excessive flushing. It normally takes about 7-8 days to go into full effect and reduces my flushing and pain. I do get pancreas pain the first week after the Lanreotide. If you modify your fat intake and eat lean meats and cooked veggies, it should help. The next couple of weeks are usually pretty good before I get my next injection. I have had more CgA blood work which is currently in the normal range and my last PET scan showed no abnormal cells, etc. For me, the Lanreotide works great. No tumors and the flushing and pain episodes are less frequent. You will almost always have some indigestion or gastritis-type pain. Stay the course and see what your next PET scan and CgA reveal. If those have changed, you may need to re-evaluate your treatment with your oncologist. I wish you luck. This disease caught early is something you will live with for a very long time with proper treatment. Hang in there.

Hello @wolf359 and welcome to the NETs support group on Mayo Connect. I so appreciate you sharing your journey with NETs and the injections. I'm assuming that the injections you speak of are Lanreotide?

It's always great to have another perspective on how a reaction to a med can change over time. I see that the liver NETs are secondary to pancreatic NETs. How long ago were the pancreatic NETs diagnosed? I'm also wondering if you had any surgeries and/or embolizations?

I'm looking forward to getting to know you and learn more about your journey with NETs.

You are right, @terryrandy5. The Chromogranin A results can be impacted by other meds, such as proton pump inhibitors as well as other health conditions.

If anyone in this group is concerned about high Chromogranin A results, I would encourage you to participate in this discussion on Connect.
https://connect.mayoclinic.org/discussion/chromogranin-a-level-was-539/
It is good for us all to remember that one test is not enough to raise worries about disease progression. Most doctors will tell you that you need to base your concerns on several different diagnostic tools, not just one.

Here is some information from the Carcinoid Cancer Foundation (CCF) regarding many of the diagnostic tests that can be used to diagnose and track the progression of NETs:
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
We do ourselves a disservice when we try to pin our disease on just one diagnostic test to provide us with answers.

I took lanreotide injections for a year and the side effects for me were worse than the cancer symptoms so I chose to stop. I still have diarrhea a lot of the time but have meds to help with that. I had a well differentiated neuroendocrine liver tumor in 2021 & had it removed. I got lucky because they were able to basically scoop it off my liver with very little margin and said they got it all. Meanwhile the primary is in my gut but it’s so small they can’t operate because it would be a fishing expedition and maybe yield no results. So it’s a gallium scan every six months and a wait and see how to treat as it progresses 🤷‍♀️. Meanwhile I deal with the yuky side effects of cancer but I’m alive and get to enjoy seeing my family. Faith plays a major role in my life and has helped me tremendously.

Hi Teresa,
Dx was in 2009 when I went to the ER with worse headache I ever had (turned out to be Pseudotumor Cerebrai). I had the Whipple surgery not long after. They discovered the liver NETs a bit later. I have been through 1 embolization (Theraspheres), Lutathera, Temazolemide/Cap (briefly) and way more recently, Lanreiotide shots.