Welcome to the NETs Group! Come say hi.

Yes, I was able to tolerate PRRT well. The treatments went exactly as they were explained and my major side effect was fatigue--really fatigued after the first treatment and less so with each of the remaining 3. For me the fatigue was most noticeable the first few days after treatment and lingered for about 2 weeks when I started to get some energy back! No nausea either during or after treatments--but I did notice that there were certain foods that I really craved and others that I just did not want to eat. I also did experience thinning hair (which I think may be unusual) but I did not lose all my hair! By the end of the 4th and final treatment, I did have mild anemia--but blood levels stayed within low end of normal limits throughout treatment. It is taking some time to build my strength back up, but I'm back to normal levels of exercise and feeling well now (about 4 months after last treatment). The protocols for after receiving the treatment are pretty strict (distance from other people and your pets for several days, laundry and bathroom protocols, etc.) but overall this treatment was not as scary as it sounds! Happy to share more if anyone else is thinking about this as a treatment. Just at the start of the journey, so will see how it goes from here!

Hi again @kjstein

I appreciate you sharing your personal experience with PRRT as well as the good results. You might also find the Connect discussion group on PRRT interesting. Here is the link that will take you to that discussion, https://connect.mayoclinic.org/discussion/prrt-treatment/

As it would be good for prospective patients to have some first-hand knowledge, can I invite you to discussions with others who might be considering PRRT?

For all of you who are currently taking Octreotide for carcinoid syndrome, by injection, there is some good news for you. The FDA has recently approved an oral form of this medication.

Here is a link to the article, "Amryt Receives Orphan Drug Designation from the FDA for Mycapssa® (oral octreotide) for the Treatment of Carcinoid Syndrome"
https://www.globenewswire.com/news-release/2022/07/14/2479558/0/en/Amryt-Receives-Orphan-Drug-Designation-from-the-FDA-for-Mycapssa-oral-octreotide-for-the-Treatment-of-Carcinoid-Syndrome.html
Please note that Stage 3 trials of Mycapssa, to determine correct medication dosages, will begin sometime in 2023. We would not expect to see the drug become widely available until much later in 2023 and more likely early in 2024.

Great news
What is the difference between octreotide and lanreotide
I currently switched doctors and she gives octreotide I have had 3 doses of lanreotide
Please let me know
Thank you

Sorry I have been diagnosed with metastasized liver NETs don’t know where the primary is as of yet

Hello @sophiarose

Personally, I have never taken either octreotide or lanreotide so I do not know the difference between the two. I understand that one is easier to inject than the other. Here is an article from the National Library of Medicine about the two different medications, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6643159/. I hope some of our members who have used these meds will be able to answer this question for you. Also, this might be a good question to ask the NETs support group on the first Thursday of each month.

The fact that the primary NET is unknown is a common problem. Have you had a Gallium 68 scan to try to determine where the primary is located?