1. < Neuroendocrine Tumors (NETs)
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Any one with Neuroendocrine tumors getting the shot once a month?

Posted by amygirl @amygirl, Dec 23, 2024

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

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Teresa, Volunteer Mentor | @hopeful33250 | 4 days ago
In reply to @elainekb4 "I was 39 when the first tumor was discovered in between my small and large intestine...." + (show)
Profile picture for elainekb4 @elainekb4

I was 39 when the first tumor was discovered in between my small and large intestine. Surgery removed it. 10 years later a couple showed up in my breast. Since then in the past 16 years all was pretty quiet then I developed a tumor in my back, my leg, and now activity is showing something in a couple of bones. It is hard to find a neuroendocrine specialist. But do find one as they are more aware of this type of cancer. I am now 66 and still feel good. And still learning. You have this.❤️ Just make sure you keep informed and if you can, go to Mayo if you ever want a second opinion. They are amazing!

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Hello @elainekb4

I am glad that you found Mayo Connect. It is difficult to face this cancer alone. I joined Mayo Connect when I was facing my third NET surgery, and I have appreciated the support of other members. Are you currently being seen at Mayo Clinic?

I would like to introduce you to @tomrennie, who also has had some NETs in the bone. Perhaps he can share more with you about this.

What symptoms are most bothersome right now?

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nannybb | @nannybb | May 8 1:05pm
In reply to @plbyates "My husband gets the sandostatin shot every 28 days and is also taking xermelo three times..." + (show)
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My husband gets the sandostatin shot every 28 days and is also taking xermelo three times a day for the diarrhea. Xermelo has definitely helped for the diarrhea.

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@plbyates I am curious, did they start your husband on the monthly injection without first trying the daily self administered ones? I asked for the daily as a trial before the monthly, because I am still wanting to go back to work and was afraid of the diarrhea possibility. I am not having that issue with the daily injections, but will admit finding I am very fatigued. Just wondered.

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bren1 | @bren1 | May 8 9:24am

Hi I have been getting lanreotide 120mg every 3 weeks. I had prrtcabout 2 years ago which shrunk the liver and colon tumors about 20% and resolved 2 on the liver. I have been getting lanreotide jabs ever since every 3 weeks. For the 1st year it shrunk them about 10% and has been stable ever since. I have never had any bad reactions to the jabs touch wood.

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vinnie694 | @vinnie694 | May 8 7:49am
In reply to @rkklinger "I'm not sure where to start this update on my husband's stage 4 NETS 31 year..." + (show)
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I'm not sure where to start this update on my husband's stage 4 NETS 31 year story that I have previously shared. We just returned from Mayo where Ron had scans, etc. His last scans were in October 2025 so it has been 7 months due to our being in AZ during the winter. The scans show several increases in size and number since the October scan. This is basically the first multiple increase since he started on Lanriotide in January 2023 when he was rediagnosed (original 1 tumor removed in 1995 - In 2023 tumors have spread throughout his skull and body). The Mayo NETS team is suggesting PRRT beginning in June 2026. The recommendation is to start PRRT now while he is in relatively good health. He is not sure if he should start now or give it 3-6 months to see what happens. We would appreciate thoughts about PRRT risks and successes. Thank you!

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@rkklinger I too was given that choice of starting PRRT treatments last May, after my tumors started to grow..I am in good health (Outside of the Tumors).. After 2nd treatment scan showed no growth, a few months after the 4th treatment scan showed the larger tumors were shrinking and the smaller ones were barely visible. Its been a year since my treatment and the MRI I had this week is showing the tumors are still reducing (a year after) and the small ones still barely or they cannot be seen.. Side effects were minimal for me a little more fatigued and crampy for a couple of days after, nothing serious.. For me it was a good choice, Hope you find peace in your decision....

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sophiarose | @sophiarose | May 7 11:13pm

I wish that they offered it to me sooner instead I went through monthly injections of Lanreotide / octreotide/ 2 bland embolizations and Afinitor none worked
I did PRRT and I am currently stable for 18 months
I am currently on Octreotide
If the hesitation is the side effects it’s a chance we all take regardless of what we are given
Best wishes

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dbamos1945 | @dbamos1945 | May 7 8:15pm
In reply to @rkklinger "@dbamos1945 What a blessing your reply is for us. I was looking for a sign that..." + (show)
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@dbamos1945
What a blessing your reply is for us. I was looking for a sign that PRRT is what Ron needs to do. We had decided that he needs to go ahead and your post confirms that decision. He has been stable for the last 3 years when we learned that the tumors had taken over his body. We are so thankful for the research that has been done since his first tumor in 1995. How incredible for all of the NETS patients that have benefitted by this research. Wishing you continued great health!

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@rkklinger: I am relieved that you and your husband are open to the opinions of previous PRRT patients. Quality of my daily life and negligible side effects weighed heavily in my decision. I will be routing for a successful treatment ASAP for your husband and eager to hear from you along the way.
It is difficult to wait until the treatment has been completed to learn tumor size, but flooding your thoughts with a successful demolition of NET cancer cells provides all energy being effective. Remember the PRRT Lutathera will be drawn directly to the NET Samatostratin receptive cancer cells… no matter where they are in your body through the blood system! This sounds to me like just what your body needs right now!
I am glad you have opportunity to receive this treatment! Hugs…

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Teresa, Volunteer Mentor | @hopeful33250 | May 7 3:32pm
In reply to @rkklinger "@dbamos1945 What a blessing your reply is for us. I was looking for a sign that..." + (show)
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@dbamos1945
What a blessing your reply is for us. I was looking for a sign that PRRT is what Ron needs to do. We had decided that he needs to go ahead and your post confirms that decision. He has been stable for the last 3 years when we learned that the tumors had taken over his body. We are so thankful for the research that has been done since his first tumor in 1995. How incredible for all of the NETS patients that have benefitted by this research. Wishing you continued great health!

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@rkklinger

I'm glad that you and Ron feel settled on a decision!

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Teresa, Volunteer Mentor | @hopeful33250 | May 7 3:27pm
In reply to @eesnerd "I'm 87 and my NET's were discovered accidentally on a CT scan for a hernia. I..." + (show)
Profile picture for eesnerd @eesnerd

I'm 87 and my NET's were discovered accidentally on a CT scan for a hernia. I have never had symptoms and still don't. I get Octreotide or Sandostatin every 28 days, and the only side effect seems to be a loose stool. After 6 months of treatment, my serotonin and chromogranin levels are near normal, but I haven't had a second PET scan yet. As you see from the other posts, everybody's experience with NET's is different. You need to find an experienced NET oncologist, even if you have to travel. We were fortunate in finding an MSU surgeon who recognized the condition immediately and put me on the right treatment track.

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@eesnerd
You were fortunate to find a doctor who recognized your condition so quickly. When is your next PET scan scheduled?

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rkklinger | @rkklinger | May 7 8:29am
In reply to @dbamos1945 "@rkklinger: 5/6/26. The description of your NET journey is unique, at least to me! I am..." + (show)
Profile picture for dbamos1945 @dbamos1945

@rkklinger: 5/6/26.
The description of your NET journey is unique, at least to me! I am glad to read that your husband is considering Lutathera PRRT infusion therapy to control, shrink & destroy these nasty cancer cells.
My story is short & sweet; Lutathera infusions (June 2024-Dec 2024) with fatigue as my main side effect, but occasionally I would feel some stomach discomfort (I told myself PRRT is attacking my small intestine tumor) and took a nap. Last week my 3 mo MRI with Evoist contrast shows continued tumor sizes continue to reduce! I am so very grateful to have received Lutathera PRRT treatment when my NET tumors had increased 40%!
Im sure you are considering RISK in your choice of treatment, i had treatment at City of Hope and the NET Oncologist and Nuclear Medicine Specialists carefully reviewed blood labs during my treatment, they were ready to take action if any irregularities appeared. The 4 infusions were a little boring, but NO problems ever occurred.
My gratitude for this NET treatment continues as I am back to feeling like my “pre-cancer” self. I have regained a great quality of life. Of course I still have Stage 4 NET cancer (metastases to liver @ primary tumor diagnosis), however now I have more time to enjoy each day to the fullest.
I know you will choose the best treatment available. If I were you I would start treatment sooner than later. Keep a positive attitude, visualize tumors dying, be gentle with your energy level & give your body the best nutrition and sleep to recharge.
Wishing you best health… Bette
dbamos1945.

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@dbamos1945
What a blessing your reply is for us. I was looking for a sign that PRRT is what Ron needs to do. We had decided that he needs to go ahead and your post confirms that decision. He has been stable for the last 3 years when we learned that the tumors had taken over his body. We are so thankful for the research that has been done since his first tumor in 1995. How incredible for all of the NETS patients that have benefitted by this research. Wishing you continued great health!

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2 replies
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eesnerd | @eesnerd | May 7 7:57am

I'm 87 and my NET's were discovered accidentally on a CT scan for a hernia. I have never had symptoms and still don't. I get Octreotide or Sandostatin every 28 days, and the only side effect seems to be a loose stool. After 6 months of treatment, my serotonin and chromogranin levels are near normal, but I haven't had a second PET scan yet. As you see from the other posts, everybody's experience with NET's is different. You need to find an experienced NET oncologist, even if you have to travel. We were fortunate in finding an MSU surgeon who recognized the condition immediately and put me on the right treatment track.

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