Interested in hearing people's experiences with PRRT

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

Mark, I was diagnosed with NETs (grade 2/3, inoperable, incurable) in Jan 2020 at Mayo Rochester. I had 2 rounds of CapeTem (didn’t work for me at all), 10 rounds of FOLFIRINOX and then 50 rounds of FOLFIRI. I was stable on chemo until Oct 2022. Had my first PRRT in December. I’m five days out from my second PRRT treatment. Had a new baseline CT scan before the second treatment—which showed darkening of liver tumors and more defined boundaries, suggesting the tissue is dying. I have tumors in my liver (about 80), bones, pancreas, adrenal gland, lungs. So far, the main side effect I’ve experienced is fatigue. I’ve had some mild nausea and lightheadedness, pain at tumor sites and referred pain in my right shoulder, too. Weight is stable. I have actually gotten my sense of smell and taste back—I hadn’t realized how deadened they were by chemo until I wasn’t having it anymore. Wishing you the best of luck.

I ve had awareness of my PANCREATIC NET for a year plus. Rare, with established core but slow growing. If I continue with a positive attitude good fat free protein reduction from red meats of coarse no smoking tobaccos and a vegetarian diet my chances of halting NET growth and living another 20 years plus providing no further metastasis of NETS. So for me I m banking on this plan.

Hey Teresa, Thank you for the response. I am not sure yet if I am an eligible candidate for PRRT but according to the tests of the tumor tissue I am NOT a candidate for immunotherapy. My main concern at this moment is when to know when to stop seeing various doctors. I've been told there is no more benefit of surgery for me and chemo and immunotherapy would not be viable either. PRRT was kind of a last ditch effort but I'm not sure if even that will be for me. Lately I have been quite down, nausea and some vomiting, fatigue, and bad stinging around the Gtube site. I have been to palliative care and they have given me some meds for nausea which have helped some but trying to wrap my head around it all.

Your response is sincerely appreciated -
My wife is scheduled for PRRT @Fred Hutch Seattle on 3/9/2023 as lanreotide is not continuing to produce good results. The tumors have spread from liver (lots of them there) to the hip bone structure and some in lower spine (based on a recent Ga68 scan).
We will have many questions to submit locally and to get answers to these ASAP!!

Thanks again,
Mark

Hi, Mark,
I was diagnosed in 2007 with a carcinoid tumor that had wrapped around several loops of my small intestine. They removed the tumor and resected what they could. Several lymph nodes were involved at that time. I started on monthly injections of Sandostatin, 20 mg in 2009 and tolerated that well. The cancer has spread over the years, with mets in my pelvis, liver, and most recently my right clavicle and scapula. All of these are small nodules and lesions with the exception of a mass on my liver. In 2019, Pet scan revealed new nodules and growth so that is when we decided to do 4 treatments of PRRT. My first one was Feb. 2020 and the only side effect I had was very minimal fatigue. With each treatment after, the fatigue increased, and I experienced hair thinning, but thankfully no nausea. Scans after the 4 treatments revealed stable mets, with no new growth.
In 2020, I switched from Sandostatin to Lanreotide. The Sandostatin was causing granulomas, which are knots at the injection site so the meds weren't being absorbed as well as they used to. I experienced more diarhhea as my body adjusted to the new meds, and have just started on Zenpep to help with malabsorption. The Zenpep is extremely cost prohibitive, and at the suggestion of my pharmacist, I contacted the Zenpep manufacturer directly and applied for their Patient Assistance Program. I just found out this morning that I qualify and can get the drug for $0000! Cost from the pharmacy was quoted at $4300/mo.

My last scans in January, 2023 show everything is stable, but my counts continue to rise. My serotonin went from 654 after PRRT to 1370 so something is going on. I have requested an appointment with Mayo and am still in the review process. I should know something from them the first of next week, fingers crossed!

I hope I haven't overloaded you with too much info, but wanted you to know the history...

@kellysg

You have provided a lot of information for @markmark007. NETs can be confusing, and it certainly helps to hear from others who have walked this road.

I look forward to hearing from you again. Will you post again when you find out about a possible appointment at Mayo?

I sure willn

I'm struggling with navigating this site, but will keep working on it... I don't know if I responded to Mark, our to someone else that responded to Mark?!

Hi, Mark,
I was diagnosed in 2007 with a carcinoid tumor that had wrapped around several loops of my small intestine. They removed the tumor and resected what they could. Several lymph nodes were involved at that time. I started on monthly injections of Sandostatin, 20 mg in 2009 and tolerated that well. The cancer has spread over the years, with mets in my pelvis, liver, and most recently my right clavicle and scapula. All of these are small nodules and lesions with the exception of a mass on my liver. In 2019, Pet scan revealed new nodules and growth so that is when we decided to do 4 treatments of PRRT. My first one was Feb. 2020 and the only side effect I had was very minimal fatigue. With each treatment after, the fatigue increased, and I experienced hair thinning, but thankfully no nausea. Scans after the 4 treatments revealed stable mets, with no new growth.
In 2020, I switched from Sandostatin to Lanreotide. The Sandostatin was causing granulomas, which are knots at the injection site so the meds weren't being absorbed as well as they used to. I experienced more diarhhea as my body adjusted to the new meds, and have just started on Zenpep to help with malabsorption. The Zenpep is extremely cost prohibitive, and at the suggestion of my pharmacist, I contacted the Zenpep manufacturer directly and applied for their Patient Assistance Program. I just found out this morning that I qualify and can get the drug for $0000! Cost from the pharmacy was quoted at $4300/mo.

My last scans in January, 2023 show everything is stable, but my counts continue to rise. My serotonin went from 654 after PRRT to 1370 so something is going on. I have requested an appointment with Mayo and am still in the review process. I should know something from them the first of next week, fingers crossed!

I hope I haven't overloaded you with too much info, but wanted you to know the history...