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

@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.

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.

@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!

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

@rkklinger

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

@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…

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

@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....

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.

@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.