Lanreotide eventually becomes less effective, why?

@dadcue
Wow.. Beyond my comprehension!!!

@tomrennie PNET with liver mets. Had a whipple Dec 2024, 5 cm well diffrentiated grade 2 Ki67 15%, entire tumor was resected with clear margins and no lymph node involvement. I have 3 liver mets under 1cm so doctors have me on lanreotide monthly injections and scans every six months. Hoping everyone remains stable.

@maeve115

I have been learning about autoimmune disorders for decades after I was first diagnosed with one.

I don't comprehend NETs because I was only diagnosed a few months ago. I would rather not to be diagnosed with NETs because there too much for me to learn. However, there seems to be a connection between autoimmune disorders and cancer. The title of the following link says it all. I don't comprehend the rest of it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9140757/

@rdiaz1998 How was the Whipple recovery? How are you feeling now? When were the liver mets noticed? I am just trying to learn your journey. Thanks.

My Whipple surgery was 14hrs but 3 hrs after coming out of anesthesia I was walking around the nurses station. I was out of the hospital after 4 days. I credit walking and the home made food I had while in the hospital for my quick recovery. My recovery was pretty easy, took no pain meds. I'm doing well, just take pancreatic enzymes with each meal but I can eat anything. I stick to a Mediterranean type diet. The liver mets were there before I had the Whipple, the surgeon was able to cut out one of the lesions but 3 tiny ones remain.

@rdiaz1998 That is a quick recovery from a Whipple. Congrats to you. Your diet and exercise seem to have helped. Is the game plan moving forward to surveil the liver mets with the 6 month MRIs and 12 month scans? Anything else?

So its been about 2 years since I originally asked that question. Lanreotide is still working for me I believe. Feeling good and have a quality of life that I did not expect to have. I continue to be a student of Neuroendocrine Cancer and the treatments for it. I see my oncologist every 6 months and we continue to monitor the disease for any real changes. What started off as a cancer fighting sprint has gradually evolved into a marathon. Hopefully one I can continue to run.

@jlsgt I am glad that it is still working for you. I hope that it continues to do so for years to come. I too try to be a good student of Neuroendocrine Cancer. New technology and research is rapidly changing the treatment possibilities. I also agree that it has become a marathon. I view it as a long term illness that I will be monitoring and managing for the rest of my life. Reading your mindset is reassuring. Thank you. What is one thing that you really enjoy doing, with your unexpected quality of life, that you originally didn't think possible?

@tomrennie Correct, so far it's surveillance along with lanreotide every 28 days. MRI every 6 months and pet dotatate once a year.

Turkey asked: "What is one thing that you really enjoy doing, with your unexpected quality of life, that you originally didn't think possible?"

I think I can better answer your question in a different way. Let me tell you some of the things I no longer take for granted.
Looking into my wife's loving eyes. A good hug with a friend or family member. Sleeping good at night without pain or painkillers. My joints are not aching. I can sit in a restaurant without a donut under my bottom.
Feeling good when I wake up and feeling I can take on a days worth of work or a days worth of fun. It's just simple things, I know. I don't take em for granted because I didn't think I would get back to this. 🙂

How bout you, Turkey? What are you enjoying these days?