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Any one with Neuroendocrine tumors getting the shot once a month?
Neuroendocrine Tumors (NETs) | Last Active: May 8 1:05pm | Replies (230)Comment receiving replies
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!
Replies to "I'm not sure where to start this update on my husband's stage 4 NETS 31 year..."
@rkklinger
We have a number of members who have had good success with PRRT. Here is a link to a discussion about PRRT:
--PRRT Side Effects and Results
https://connect.mayoclinic.org/discussion/prrt-side-effects-and-results/
--Interested in Hearing People's Experiences with PRRT
https://connect.mayoclinic.org/discussion/prrt-treatment/
I would like to invite @vinnie694, @sophiarose, @rhb18, @zacharycat, and @dbamos1945 to share their PRRT experiences with you.
You said that your husband wants to wait for a few more months. Has he explained why he is hesitant?
@rkklinger i hesitated like you and had been offered it 2 years before as one option but worried about the side effects so kept on with the monthly shots ( which was keeping everything steady) but now ( about to undergo the 3rd PRRT treatment) if i had my time again I would do the PRRT treatment immediately.!!
@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.
@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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@rkklinger IMO I would follow the drs advice instead of waiting on it to grow or spread more.