Interested in hearing people's experiences with PRRT

Hello @sherryboynton

First of all, welcome to Mayo Connect. I see that you just began posting today and I'm glad that you are reaching out on this discussion group. On Mayo Connect, we have only had one Member who has mentioned PRRT treatment. She is this process now and I will invite her to discuss it if she would like to. Her name is @tresjur.

Regarding your appointment at Mayo in Jacksonville next month, you should definitely discuss this with them. I have not been treated at Mayo. While I've had three surgeries for NETs at this time there is no evidence of metastasis, so I have not looked into this type of chemotherapy. I'm sure that they will do their best to answer your questions. As I was reading some of your other posts it seems like you have met with a lot of doctors who have indicated that your type of tumor is not a candidate for this type of treatment. Is that correct?

How are you feeling now? Do you have symptoms of carcinoid syndrome? What is your greatest concern right now?

Here is a video about PRRT treatment from the Carcinoid Foundation, https://www.youtube.com/watch?time_continue=3&v=AqAyEGECDkQ

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.

@sherryboynton

I can understand that this would be difficult to wrap your mind around. I would feel the same way! I hope that your Mayo appointment will help give you some direction in what you can do next. Have the doctors you have seen been carcinoid specialists? Here is a listing of those who are, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. Have any of these doctors been consulted on your case?

Your situation seems unique in that you said you have, "goblet cell carcinoma with some carcinoid aspects." Here is some information I found on the Carcinoid Foundation website, https://www.carcinoid.org/2010/07/09/goblet-cell-carcinoid-new-article-in-the-world-journal-of-gastrointestinal-oncology/. This sounds like a rather unique, rare type of tumor. Have you learned any more about this?

I hope you find some answers. If you care to share more, when is your appointment at Mayo, Jacksonville?

I would also like to hear other peoples experience with the PRRT treatment. I will be starting with this therapy on April 24 in Rochester.

Hello @klpetts and welcome to Mayo Connect.

I can understand your wanting to hear from others who have had PRRT treatment. It is comforting to talk with others who have had this treatment.

If you are comfortable sharing more can you share with me a little of your history with NETs? For example, how long ago was your initial diagnosis? Have you surgeries or other treatments?

Here is a video about PRRT treatment which might be helpful to you as you consider this treatment,

Thank you Teresa.
In August of 2019 I went to the ED for abdominal pain, after lab work and testing (x-ray, CT, abdominal US) it was discovered that I had an ulcer in my duodenum, and was admitted for a few days. During my hospitalization I had more testing (EGD, CT with more images), with this it was found that I had a possible mass attached to the ulcer. At my post hospital follow up in GI I was scheduled for a second EGD, this time with ultrasound. During the follow up from that I was told that I should have the Whipple procedure done. Referrals and appointments made for me to to to Rochester. My GI provider then had me do a PET scan with dotatate. With those results in he called me with the unfortunate news of pancreatic neuendocrine cancer stage IV, and canceled the appointments in Rochester. I was then referred to the Cancer Center in Eau Claire. In October I started octreotide injections, which I get every four weeks. My CT and lab work for the end of Dec/ beginning of Jan was good. Then in March I had lab work and another PET scan, those results were not in my favor. The scan showed that the cancer had spread to more parts of my body. My oncologist gave me a couple of options, with the PRRT being one of the options. Karin

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.

Hello @klpetts,

I am sorry to hear of your struggle with a NETs diagnosis. I can only imagine how disappointed you must be. If you don't mind sharing more, could you share what the other treatment option was?

I am wondering, however, why your appointments in Rochester (I'm assuming that you were going to the Mayo Clinic) were canceled.

All patients have the right to obtain a second opinion. Have you considered getting a second opinion at Mayo to see what other options may be available to you?

Here is a video presentation from Dr. Thor Halfdanarson, who is a world-renown NET doctor at Mayo. You might find his talk interesting,

Hello @ronregency,

I appreciate that you continue to share your journey with Pancreatic Net. If you are comfortable sharing more, could you share how the diagnosis of a NET in the pancreas was discovered? Were you having pain or other problems?

Outside of the diet, you have explained, were any other treatment options offered to you?

The consults and whipple procedure at Mayo Rochester were canceled because my cancer is a stage four. When found not only did I have the pancreatic tumors but it had spread to my left hip and several lymph nodes of my abdomen. At my follow up in March my Mayo Oncologist in Eau Claire suggested the PRRT or an oral chemo. Because the cancer has now spread even more the PRRT is the best choice for me. I will be heading out early tomorrow (April 24) morning to Rochester for my first infusion. Thank you for the video, it was helpful.