Interested in hearing people's experiences with PRRT

Lyons1234
I just read your post I see you were on Everolimus
I am to starting next week
My NET of unknown primary is spreading it is in a liver lymph node and now my spine
Please I have done my reading on side effects and success rates
I need to find someone who has been on the medication and see what they did to help with the side effects and of course to hear there story of how the drug worked
Thank you

Husband was diagnosed in Nov. of last year with low grade neuroendocrine carcinoma which started at the duodenum and metastasized to the liver. Jan. of this year started lanreotide injections. This went well until last month then pet scan showed liver had multiple tumors and they had gotten bigger. Now he is supposed to start lutetium Lu-177 dotate infusions. Would like to know if anyone else has had this and would like to know life prognosis. I know no one knows for sure but God thanks

Hi,
I used Everolimus for 4 weeks. I started getting mouth sores after about 3 weeks. Seems like a common side effect. My onocologist almost expected it and he said he could give me something for it. Ofcourse everyone is different. some people may have no side effects. Drs
wanted me to stop taking Everolimus when I began PRRT. The cold soars went away after I stoped taking it. It didn't make me feel nauseous, fatigued, or give me secretory bowel movements. Although I have no factual measure of its effectiveness, since I only took it for
a short time. I felt it was helping with symptoms, and I would continue taking it, if necessary.
I guess you just have to try it and see what works. They could take a biopsy of your tumor
and examine it to see what might work best for you.
Good Luck
Afinitor is the common name for Everolimus it easier to pronounce and spell.
Taking Everolimus (10mg) wasn't a big deal but I would opt next time for some cold sore meds.

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but it’s important for you all to remember that they are slow growing and people live many years with them as they are treatable.
I had eleven years of misdiagnoses before I had a blockage in my small intestine (March 2018), and a 2 cm carcinoid tumor was found. (There went 10” of those intestines.). They immediately started me on Octreotide LAR. Then in July 2019 I had another blockage - this one in my large intestine so there went 11” of that intestine. In addition to these tumors, there are several scattered around my body - including one in my stomach that is not resectable. So in April 2021 (following a year of the pandemic that delayed my plans), I started PRRT at Mayo in Phoenix.
Following my first treatment, I had a reaction they had never seen before and ended up in the ER with uncontrollable vomiting and diarrhea, and an episode of vertigo which caused me to fall. So the team at Mayo decided to halve the dosage, which worked much better. That’s not to say I didn’t have to deal with side effects such as diarrhea, fatigue, and nausea, but they were controllable.
So fast forward to March 2022 and my GA 68 scan showed the disease was “stable” with no new growth and some decrease in size and activity. Then in July this year I had another scan that continues to show stable disease with no growth. It’s now been 2 years since I completed treatment. I continue to be on Octrotide LAR 30 mg every 28 days. I usually have to take Imodium for a day or two afterwards or if I eat something that doesn’t agree with me, otherwise life is pretty normal (for someone 74 years old!). My next scan is scheduled for January 5th.
I believe the PRRT has stabilized my condition, and fingers crossed it will continue to do so. And yes, I would definitely recommend it.
I send best wishes as you all go down this journey.

Our case has moved from diagnosis of mass on pancreas with spread to liver. Kim finished 9 months of chemo which was very successful reducing size of tumors in both areas by 80%. We continued the Lanreotide until recently, switching to Octrecide. We have completed 1 of 4 PRRT treatments. She has generally tolerated the first treatment. Our medical team thinking was to do the PRRT now while the cancer is at its lowest state to get it at to a stage that we only have to monitor it and and as growth occurs again, the best course of treatment will be done. We also are going through the process of getting approved for a Liver Transplant as a option for now, so if that is the best course of action we are all set. The reasoning for transplant option is if the cancer is only in the liver,, the opportunity to potentially remove all the cancer will be considered. Either way our long term prognosis is good as our team hopes to keep moving this cancer down the street for decades. Hope that helps you, we all got this! Let me know how we can help further.

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but it’s important for you all to remember that they are slow growing and people live many years with them as they are treatable.
I had eleven years of misdiagnoses before I had a blockage in my small intestine (March 2018), and a 2 cm carcinoid tumor was found. (There went 10” of those intestines.). They immediately started me on Octreotide LAR. Then in July 2019 I had another blockage - this one in my large intestine so there went 11” of that intestine. In addition to these tumors, there are several scattered around my body - including one in my stomach that is not resectable. So in April 2021 (following a year of the pandemic that delayed my plans), I started PRRT at Mayo in Phoenix.
Following my first treatment, I had a reaction they had never seen before and ended up in the ER with uncontrollable vomiting and diarrhea, and an episode of vertigo which caused me to fall. So the team at Mayo decided to halve the dosage, which worked much better. That’s not to say I didn’t have to deal with side effects such as diarrhea, fatigue, and nausea, but they were controllable.
So fast forward to March 2022 and my GA 68 scan showed the disease was “stable” with no new growth and some decrease in size and activity. Then in July this year I had another scan that continues to show stable disease with no growth. It’s now been 2 years since I completed treatment. I continue to be on Octrotide LAR 30 mg every 28 days. I usually have to take Imodium for a day or two afterwards or if I eat something that doesn’t agree with me, otherwise life is pretty normal (for someone 74 years old!). My next scan is scheduled for January 5th.
I believe the PRRT has stabilized my condition, and fingers crossed it will continue to do so. And yes, I would definitely recommend it.
I send best wishes as you all go down this journey.

@phylissden
Good to know PRRT has stabilized your condition.
My son had pNet 5cm on body of pancreas. It was irresectable because of blood vessel wrap around the tumor. Spine lesion was seen and lymph node affected. He took his 2nd treatment of PRRT last month. Recent blood work shows drop in platelet from 130 to 75 and significant uptake of radioactivity in the spine lesion. Doctor suggested there could be internal bleeding and mets to spine but will wait for the scheduling of pet scan dotatate on further action.
Is there any remedy for the drop in platelet ?

@phyllisden Thank you for your prompt reply and your consolation. Will relate your answer to my son and ask him to take iron rich supplement like fish oil and vitamin E. He is right now following a Mediterranean diet.