Interested in hearing people's experiences with PRRT

I keep a notebook, basically my Health Journey, of appts, questions and answers, lab results, etc. I'll be ready!

I'm so glad to hear that, @kellysg! I appreciate the update. I'm looking forward to your comments and update after the appointment at Mayo.

Do you have a list of questions prepared for your upcoming appointment?

@hopeful33250 Mayo finished their review of my case and accepted me. I have an appointment in early March!

@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?

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...

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?!

@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?

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...

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

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.