Interested in hearing people's experiences with PRRT

Comments - please!!
Thanks ,
Mark

Hello @markmark007,

When you say that you do understand that these questions are "patient specific" you are correct. I have heard of NETs patients who have had more than one round of PRRT and most likely there are other treatment modalities that I am not aware of. It is important to communicate some of these concerns with your oncologists.

I might also recommend that you connect with Mayo's virtual support group if you have not done so already. This group meets on the first Thursday of every month from 5:30 to 7 p.m. EST, via Zoom. The meeting originates from the Mayo Jacksonville campus and the facilitator of the meeting is a Mayo social worker. There are approximately 25 NETs patients who attend each meeting. While there is often a speaker from Mayo's staff there is usually a minimum of a half hour when the members have an opportunity to share with each other and ask questions.

I realize that I have not answered many of your questions, however, NETs treatment is quite an individual process.

many thanks !!

I am interested in nutrition and intestinal NET's.

I was diagnosed in March 2018 with NETs in multiple locations after having a blockage in my small intestines. My first line of treatment was monthly injections of Octreotide. But when a GA 68 scan revealed some growth in April 2020, I had PRRT at Mayo in Phoenix from April-October 2021. The Mayo doctors explained at the time they had not determined when was the "best" time in the course of the disease to do this. I decided it was best to do it when I felt fairly healthy. I also understand it could be repeated. I do not consider it "the end of the line" for me. I personally would consider chemo more in that category - a personal choice.
There are procedures that specifically target NETS in the liver that I would encourage you to research and discuss with her doctors.

Hello @jerrynuttrition and welcome to the NETs discussion on Mayo Clinic Connect. You ask a good question. Here is a link to an article from the Carcinoid Cancer Foundation about nutrition
https://www.carcinoid.org/for-patients/general-information/nutrition/nutrition-and-diet-for-carcinoid-patients-an-interview-with-jeffrey-i-mechanick-m-d/
Have you recently been diagnosed with NETs in the intestinal tract?

Phyliss:
Your response is sincerely appreciated.
Can you comment regarding any side effects you may have experienced?
Thanks again,
Mark

Certainly, but I want to stress first that everyone is different, and I tend to be one of those individuals that sometimes does strange things.
Three days after my first treatment I had vertigo, nausea and vomiting, diarrhea, chills, dizziness, stomach pain. Neither the oncologists at Mayo nor my local oncologist had ever heard of this reaction. So when I went back 8 weeks later, they halved the dosage (which I continued through treatment). Most common reactions after that were nausea (which we had success controlling with .5 mg of Lorazepam + 4-8 mg Zofran), diarrhea (usually controlled with Imodium), and fatigue - something hard for me to deal with but I learned to give in and rest when I needed to. So other than problems with the first treatment, I’d say all these reactions were pretty well controlled.

Your comments are sincerely appreciated!!!
Mark

Hi Mark:

I have commented before about my experience with PRRT, so will try not to be repetitive! I was diagnosed with metastatic Nets in Liver with an unknown primary in Jan. 2021. Started Lanreotide injections immediately and when slow growth of the liver tumors was seen on subsequent scans, my oncologist at Mayo Arizona recommended PRRT. I started in summer of 2021 and completed all 4 treatments in January 2022. Follow up scans showed significant shrinkage in all sites and that shrinkage has continued through recent follow up scans--so very successful for me. The treatments themselves were not difficult--long days but no problems during the infusions. I too was told that I had some odd or not usual side effects--hair thinning (but not complete loss!), occasional heart arrhythmias, and eye floaters, all of which cleared up as treatments went on (could have been from stress!). My greatest side effect was fatigue, quite severe with the first treatment, less so with each one. But by the end, I could feel the effect of the fatigue and it took a while to shake it off. They will monitor your blood counts and they do go down over time with the treatments, but come back up pretty quickly. A few changes in food preferences and lost a couple of pounds, but no nausea. Overall a good experience for me. All at Mayo Arizona--they are terrific! I understand that there is a new clinical trial to try a new "Alpha" PRRT treatment that is being used in Europe and they are getting even more promising results with that. I believe Mayo may be participating...something to check on. There are also trials looking at repeat use of PRRT--I believe that is also approved in Europe--check on the Net Research Foundation Website for videos for patients explaining some of the new treatment breakthroughs. Much on the horizon! Hope that helps!
Karen