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Anyone still have pancreas pain while taking Lanteotide?
Neuroendocrine Tumors (NETs) | Last Active: Sep 20, 2023 | Replies (18)Comment receiving replies
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.
Replies to "Not sure about pain never really had any and have the same thing. I do have..."
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.
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So, are you saying thst the Lanreotide increased the growth of the tumor in your case?