Updating about My Lanreotide Injections & CT Scan

Hi @ediee, I wanted to check in. How is your husband doing now? How are you?

Thankyou for asking, he’s doing well now, back to baseline after stopping his sandostatin injections. Just didn’t agree with him at all. He’s been dealing with this disease for well over 40 yrs, 2 bowel resections, but his tumors are non functioning, with no liver or major organ Mets, so we’re grateful.
As for me, if he’s doing well, so am I!

That’s great I have been taking this shot for 6 years and my tumors has stay stable I am in a stage three a and so far my tumors I have one in my chest, one in my pallet and sub in my stomach and my lymph nodes. They are not growing. They are just they’ve grown a little bit but not much. Everything states is staying stable.

Welcome, @canuk! As someone living with NETs for over 13 years, you will have a lot of experience and encouragement to share.

I look forward to getting to know more about you. May I ask what type (or where) of NETs you're dealing with? How were you diagnosed? What do you wish you had known when you were first diagnosed?

Hi Colleen,
My cancer is neuroendocrine small cell carcinoma originating in the gut and metastases to the liver. I have over 40 cancer spots on my liver. I have had a section of small intestine removed along with my appendix and gall bladder. Recovery from that took about 2 months. As noted before, I have been self injecting, every 4 weeks, with a form of lanreotide called Somotuline Auto gel. I am now in my 13th year of cancer. Some may call it a journey but it is a road I would much rather not be on.
When first diagnosed with the cancer ( it was discovered by chance when I went in for an ultrasound for urination problems) I was very taken aback to say the least. I figured that I might as well say goodbye to my 2 older sisters. Since then, my 2 older sisters have both passed away and I am still here.
One tends to go from shock, to fear, to resignation. As well, one has to adjust to a new normal. I used to have a large file of all the places I wanted to travel to. That file was replaced by my next large file about medications, appointments, doctors contact information and information on "the cancer journey".
For a while I was on a trial drug called pazabonib. It didn't help. In fact, I quite the trial because I felt it was doing more harm than good. My hair turned white, my heart took on a funny murmur (not too serious), diabetes 2 took hold and, for a while, I needed a walker to get around. My hair is still white but has some brown streaks, my heart condition has not gotten any worse, the diabetes is under control with medication and I walk without any aids. However, I have no regrets in at least trying the drug. I was a science teacher in my working days and it would have been rather hypocritical for me to not volunteer for a scientific study.
I used to spend a lot of time monitoring my body for changes and worrying that things would get real bad real soon. However, the longer one deals with cancer, the less it bothers one. My philosophy is to enjoy life. Death will come whether-or-not I spend my time worrying.

Thank you for asking. I think the worst part of this process is that I am extremely tired!

My husband had a carcinoid tumor removed from his intestinal area 20 years ago, then two years ago accidentally found carcinoid syndrom (random cells throughout his body, no actionable tumors) and began lanreotide monthly in the office of the oncologist who did the original surgery. Growth and spreading stopped, labs are in the normal range. He is still very frightened so all of your experience is helpful. Thank you, we'll continue!

Hola, mi nombre es Maria y fui exitosamente operada de un tumor neuroendocrino en la cabeza del páncreas en el 2016. La semana pasada una tomografía mostró una nueva lesión en el hígado y voy a iniciar tratamiento con la inyección. La doctora me habló de efectos secundarios como caída de cabello, pero no me habló de pérdida del apetito. Nunca he querido sobre cargar el hígado con proteínas en polvo. Algún consejo o recomendación para prevenir bajar de peso extremadamente? Desde la cirugía en 2016 he bajado mucho de peso. Todos los consejos que puedan darme sobre este nuevo camino que emprendo se los agradezco enormemente

I have been on lanreotide acetate spring Hormone shot therapy treatment for my Pancreas neuroendocrine tumor for 6 years now, so far my many tumors has not grown. I take a ct scan every 6 months now was taking them every 3 month so that’s is an improvement. Took a pet scan about two months ago it’s show the same. I’m so far this is working out for me. I do have a lot of diarrhea and stomach pains with watching what I eat and the new medicine has helped.