Updating about My Lanreotide Injections & CT Scan

Thanks for your update. I’ll have a 3rd injection of Lanreotide next week and have a marked loss of appetite since I started in August. I have 4 small metastatic NET liver tumors which saw a 47% progression from March - July so my drs opted for Lanreotide to try and stabilize them.

I’m hoping it’s the Lanreotide which is taking away my appetite and not the disease.

Any input would be much appreciated.

I’m not sure if the 10 months was an insurance approval item or not, but my oncologist told me before yesterday’s injections that he would recommend me staying on them indefinitely. Now if I could gain some of the weight l have lost and continue to do so I would feel better about staying on them. How have you stayed on them so long with the diet limitations? BTW, I love chose Zebra as your name. I don’t know if you saw that one of the mentors gave me the nickname of unicorn zebra due to my apparently being the only person with both CLL and NETs. Not really something that I’m happy to be know for, but it’s what it is! Thanks for your encouragement!

@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe because I have lung NETs not any type of GI NETs. I don't have carcinoid syndrome and feel bad for those of you that do. I do know octreotide really took away my appetite and I already had a lot of food restrictions for many other ailments so I'm very limited in what I can eat anyway. I lost 5 pounds a month for the first six months much to the dismay of my oncologist. Then my weight stayed stable for 6 months. Then the next 6 months I gained 30 pounds. It was so weird because I felt my diet was the same all 18 months. I've since lost nearly 30 pounds again, but intentionally this time.

I do have several side effects from the octreotide. The most frustrating ones to me are bradycardia (slow heart rate -- down to mid to high-40s when resting). It also made me diabetic with a lot of weird glucose spikes. But I coughed constantly for 30 years and other respiratory issues prior to taking octreotide so I love octreotide. It was a game changer for me. Before, it was like having bronchitis for 30 years. It annoyed me and everyone around me. Try to go to work, a movie or out to lunch with that issue. My 50+ lung nodules were an incidental finding 15 years ago -- slow growing. I'm guessing they've been there for 30 years due to my symptoms. Took doctors 12 years to figure out what they were. Stumped everyone. They finally insisted on a biopsy when my breast cancer came back. Aha! Octreotide also increased some side-effects I was already having from my breast cancer meds, but again, worth it.

Well, nana120 the unicorn zebra, I also have a few zebra diseases, but even zebras run in herds so we're all in this together. Hope you can gain some weight back. 🙂

Great news for everyone else that is having good results with the lanreotide too!!!

@nana120- I too have been losing weight for about 6mo post surgery, and 5 Lan injections. Then I went stable in weight for a month, and now started gaining lbs. As the NET sites suggest you can eat most foods as long as there are no ' consequences'. I still stay away from aged cheeses( although I love them!), tomatoes, watermelon. And I eat an egg a day plus 1/2 avocado. Some days I have a tablespoon of honey ( raw or manuka) on a toast. I eat tinned sardines 2-3 times a week, and fish ( branzino, cod, flounder). I add protein powder to banana- oatmeal pancakes. I think you can slowly get back to your usual diet, just small portions and eat often. Best! And keep on fighting!🦓💜

@nana120 I wasn't told of any dietary restrictions when I started my octreotide injections, but maybe because I have lung NETs not any type of GI NETs. I don't have carcinoid syndrome and feel bad for those of you that do. I do know octreotide really took away my appetite and I already had a lot of food restrictions for many other ailments so I'm very limited in what I can eat anyway. I lost 5 pounds a month for the first six months much to the dismay of my oncologist. Then my weight stayed stable for 6 months. Then the next 6 months I gained 30 pounds. It was so weird because I felt my diet was the same all 18 months. I've since lost nearly 30 pounds again, but intentionally this time.

I do have several side effects from the octreotide. The most frustrating ones to me are bradycardia (slow heart rate -- down to mid to high-40s when resting). It also made me diabetic with a lot of weird glucose spikes. But I coughed constantly for 30 years and other respiratory issues prior to taking octreotide so I love octreotide. It was a game changer for me. Before, it was like having bronchitis for 30 years. It annoyed me and everyone around me. Try to go to work, a movie or out to lunch with that issue. My 50+ lung nodules were an incidental finding 15 years ago -- slow growing. I'm guessing they've been there for 30 years due to my symptoms. Took doctors 12 years to figure out what they were. Stumped everyone. They finally insisted on a biopsy when my breast cancer came back. Aha! Octreotide also increased some side-effects I was already having from my breast cancer meds, but again, worth it.

Well, nana120 the unicorn zebra, I also have a few zebra diseases, but even zebras run in herds so we're all in this together. Hope you can gain some weight back. 🙂

Great news for everyone else that is having good results with the lanreotide too!!!

Just FYI, my NETs in my liver that is the largest tumor is metastatic from my lung and the oncologist & radiologist hardly pay any attention to the lung NET even though it is considered to be the original source. Sometimes I leave the office visit with more questions than before I went in. Thank goodness for a group like this to share experiences!

@nana120
So they didn’t remove your lung NET? Or had it already metastasized when first discovered?

Since banana is a “no-no” on my lanreotide list, how are you able to eat them in your pancakes? Also, I cannot have any sweets & I see you have honey. Is that what you eat as syrup on the pancakes? I cannot imagine pancakes without syrup. The rest of your diet I agree with except the sardines (personal preference). Thanks!

Hi Nana120
I can relate to you. I am having my 3rd Lanreotide this week. I was on a 4-week spread but lost it 1 week prior, so now I am trying a 3-week spread. Just had a CT scan and waiting to hear if my liver tumors are stable (they also grew 20% in 2 months). It's all so tricky and such a balancing act for each of us. Perhaps the best news is that, due to more sophisticated testing, more people are found with NETs which means more attention given and hopefully a cure.