Long Time Survivor With Concerns re Metastasis

I'm also on Lanreotide...have had two injections so far. I have 3 TACE treatments with the first one starting next Friday. They are treating my liver in thirds...treatments on 3/31, 5/ and 5/31. 7am arrival, procedure at 1pm, release the next day around 1pm. I have similar Lanreotide symptoms, as well as itching and pain around the injection site that goes away after about a week. The plan is to have the TACE kill as many of those little cancer cells as possible then monitor via petScan and hope the Lanreotide keeps the cancer stable for as long as possible. Going to get a 3rd opinion as my current oncologist/radiation team says surgery to remove will never be an option and that doesn't sit well with me. Best of luck with your journey!

Hello, all my fellow NET travelers. I saw Dr. Dasari at MD Anderson. He gave me three choices to deal with my NET: do nothing, but have a scan every few months to track change; start Lanreotide treatments; start PRRT treatments. I chose the Lanreotide, and have had my first shot. Side effects have not been terrible, and are mostly gas, intestinal cramping, and today, 5 days in, burning in my stomach that is likely gas/acid. I will go back to MDA in July or have my next scan done with my local oncologist.

That is good news, @davisnrn,

I'm glad that the two mouthwashes helped you. It is also good to know that you can take breaks from the meds when you need to. ",,,onward and upward" is a great attitude!

I look forward to hearing about your progress. Will you keep posting?

3 days off Everolimus and WOW my fatigue and aches are gone. Dexamethasone mouthwash and Miracle Mouthwash have helped mouth sores to start healing. i will restart drug in3 more days so hope I have better luck second time. My Mayo oncologist told me not to be afraid to stop the drug to mitigate side effects and restart when improved. So onward and upward. Sharing in case there are others with side effect worries on this drug.

Wishing you all the best, @davisnrn. I'll look forward to your updates.

thanks for your note. always good to hear of other NET folks with good outcomes. I lost 5 lbs in a week. not sure about the week off the drug. Not sure if same problem will recur when I go back on. If so, the possibility of reducing dosage, or doing every other day at same 10mg. will give it a real try but it’s hard to feel so much worse with treatment than without any treatment. will start back on 3/28 and will stay connected to Mayo Connect. thanks again.

My metestatic carcinoid cancer was discovered by accident when my GYN was doing an endoscopic look at a tumor on the top of my cervix. It was mucoid but she found mets scattered through my mesentery. I was sent to Moffitt in FL for several years, every 3 months. Now I get my CT at the oncology center and Sandostation Lar in my hip every 28 days. No surgery done since it has already mestiasized.
My cancer was found July 13, 2006, and it is basically staying the same. I tire more easily. I have the issues that go along with it- elevated sugar, low thyoid, occasional blockage in small intestine that resolved without surgery. Thr primary is very very small in the ilium.
My question is do you have trouble sleeping? Lately at night this has been a real problem I do not have the Syndone. Id inability to sleepvassociated with carninoid b

Hello @gneiss50

I appreciate your update after your visit to MD Anderson. It sounds like you have decided on treatment with Lanreotide.

Will you continue to share how you are doing? Do you have an appointment yet for your first Lanreotide injection?

Hello @davisnrn and welcome to Mayo Clinic Connect. It sounds as if you have had some effective treatment at Mayo Clinic. Mayo has some great NET specialists.

I am a 20-year survivor of NETs and I've had three surgeries of the upper digestive tract. No other treatment has been needed so far. You will find that each person's story of their NETs journey is quite different.

I am sorry to hear of your painful mouth sores. Does your medical team think that these will return when you begin the treatment again? I see that @bluedane has also taken Affintor (the brand name for Everolimus. I hope that he/she will join this discussion and share experiences with you.

I'm guessing that with these mouth sores, eating has been a problem. Have you lost a significant amount of weight?

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis in 2014 with likely no future progression. However in 2018, discovered many liver mets which caused paraneoplastic autoimmune syndrome blasting clumps of antibodies onto my spinal cord causing neurological problems. after about 1 year of treatment including ablation of half the liver tumors I have been reasonably healthy and happy all thanks to my care at Mayo in Rochester. I have been on Lanretide injections every 28 days since 2018. now liver tumors are increasing and doctors have recommended Everolimus oral therapy or PRRT. I chose the oral Everolimus and took it for 12 days with fatigue, joint pains, and 7 painful mouth sores. I am off the drug for one week now to heal the sores. Wonder if these side effects will come back when I resume the Everolimus. Anyone have experience with this drug and any suggestions. thanks in advance.