Updating about My Lanreotide Injections & CT Scan

Hi @nana120

That's such great news to be stable!!! Sounds like the lanreotide is doing its job! I'm curious why they only plan to do this for 10 months. I've been taking the octreotide injections for 2.5 years for lung NETs/DIPNECH and don't intend to stop unless it becomes ineffective. It's not only keeping my tumors stable, but it has really helped my respiratory symptoms.

Thanks for updating us!

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.

This is a great news! Looks like Lanreotide is keeping the growth in check!
I just had my 7th injection. My liver mets are stable, no new growth.
I have been told I will get the injections every month for as long as they work.
God bless!💜🦓

Do any of you have pain with NET liver metastasis? I’ve been living with them for 14 mos (3 chemo embolisations w limited results) and they’re starting to make their presence far more known the past 3 weeks. Next scan is in 5 days and I’m concerned they’re growing.

Just curious if it’s normal to have burning and occasional sharp pain. There is no NET support group yet at my hospital here in Switzerland.

Many thanks for any advice you might have.

I had my pancreatic cancer surgery in Mar 2020 and 5 months ago my scan showed new spots and one tumor on my liver. A few weeks later I did start having sharp pain, don't recall burning sensation, but the pain for sure, even wrapped around to my back. I've had 3 Lanreotide injections which are showing an improvement in my blood tests and no more pain. I get my next PET scan tomorrow and hoping for no new growth and followed with my next Lanreotide injection on Sat. My scans got moved from annual to every 6 months because the blood and urin tests results had doubled and some tripled

That is great news and certainly gives me hope for the same outcome. I've also had 3 injections and get my next PET scan tomorrow, followed with my next injection on Sat.

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!

Actually I did not have symptoms prior to my diagnosis. My NETs was discovered just like most are by accident when testing for another issue it showed up. I had several MRIs after it was discovered and finally a biopsy which all took over 8 months before my diagnosis. There is no telling how long it had been growing & might not have been discovered if not by accident. Good luck with yours!

I don’t know which it is either, but because of weight loss I really try to eat as much as the restricted dietary guidelines with lanreotide will allow. I have been adding protein powder to my fat free Greek yogurt and oatmeal. I have been encouraged to drink a protein drink, but have chosen to do so yet due to having abdominal cramps after trying one. My oncologist said everyone was different and I would just have to work through things for myself, but sometimes I hate playing roulette with my intestinal tract.

@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!!!