Any one with Neuroendocrine tumors getting the shot once a month?

Posted by amygirl @amygirl, 2 days ago

I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?

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Hi! I have been receiving Octreotide injections once a month for about a year now. For me, the first few months caused some fatigue but it’s hard to say if it is from the shots or the cancer itself. I am stage 4 and my cancer has metastasized to my liver. I recently finished 4 rounds of Lutathera radiation in conjunction with the shots. I haven’t really noticed any ill effects of the shots personally and I will be receiving them every month for the rest of my life. I hope this helps:) Prayers and well wishes for you…

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I take Lanreotide and as far as I know no side effects after almost 2 yrs on it. I did stop taking it one month because it did not appear to help me. My tumors kept growing and spreading so they switched me to CapTem. However a couple weeks after missing that one shot I started having heart rate issues. After a slew of heart tests it was determined likely caused by my cancer. Started taking it again and sure enough back to normal. So even though it did not slow the growth, it does manage my Carcinoid Syndrome caused by the tumor load.

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Been taking Ocreotide for about 18 months 2 shots every 28 days.. stage 4 metastasized to the liver. Just finished my first round of Lutathera.. so far no bad side effects.. 3 more treatments to go..

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I had my 42nd lanreotide injection recently I’ve only had lethargy for a few days or so. I have stage 4 grade 2 with pancreatic primary metastic to the liver 20 tumors that are functioning gastrinomas injections control some of my symptoms

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What symptoms do u have? Are lesions same as tumors?

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I had unpredictable diarrhea, as far as I know lesions are tumors.

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@kevinmonroemi

I had unpredictable diarrhea, as far as I know lesions are tumors.

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I’ve been getting two injections of 40 milligrams every 28 days for the last 3 years. Dr says probably the rest of my life… not fun but it does help control the tremors and flushing. The diarrhea not so much.

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@catalinaharley752

I’ve been getting two injections of 40 milligrams every 28 days for the last 3 years. Dr says probably the rest of my life… not fun but it does help control the tremors and flushing. The diarrhea not so much.

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I get 120mg every 4 weeks. It does control all the symptoms! My hair started falling out, so I take Biotin and it seems to help.

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I have been receiving the Octreotide injections (Sandostatin, and now lanreotide) for 11 years, every 28 days. The only side effects that I have noticed is that after my first shot 11 years ago, my blood sugar went up and I am now diabetic and deal with that on a daily basis. Other than that, I do not know of any other side effects. My liver and mesentary tumors have remained stable through these 11 years.

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