Hello

I have a couple of NETs tumors. One in the lung one in the mediastinum. There were other “hot spots” on my scan however they only biopsied the 2 largest tumors. That was August of 2022.

And yes the PET scans were done the Mayo Clinic in Phoenix Arizona.

Shortness of breath and chest pain were my symptoms and still are. I believe it’s related to carcinoid syndrome. Fatigue and stamina are my biggest physical limitations.

The primary treatments were targeted radiation combined with a carboplatin-etoposide chemotherapy. This reduced the tumors by 50%..

After primary treatments ended my new treatment is now monthly injections of Lanreotide followed by PET scans every 6 months.

From diagnosis to treatment it took 16 months total before I gained my energy back. The Lanreotide injections help but I am still not without pain. So that is my new normal.

Some foods exacerbate my discomfort and I have found that I need to eat smaller portions.

As of now I am still gaining strength and getting around much better. I believe I just completed my 6th scan and no significant growth has been noted.

I recommend you look up and follow the NETRF.org site for NET research if that is something that interests you.

The lanreotide is not without side effects. Hair thinning and thickening of the heart valve are associated with the treatments. As is blood sugar swings.

I have learned a lot by watching neuroendocrine cancer awareness network on YouTube.

Hope this helps. And don’t forget to give yourself grace.

Be blessed
CEB1