PRRT has been approved by the FDA Jan 26, 2018, as expected
PRRT was approved by the FDA on Friday, January 27, 2018 for use in the U.S. AAA is the manufacturer (who was purchased by Novartis). They also are behind the Ga-68 DOTATATE. They have just completed construction of a manufacturing site in NJ which is going through a GMP review by the FDA (Good Manufacturing Practices). According to Josh Mailman, President of Northern California Carcinet Community and well versed in NETs. Josh states the cost per dose will be $47,500 + the cost of a day of patient care at the facility and extras such as amino acid (for protection of kidneys). AAA is working with CMS (Medicare) and the insurance companies to gain approval of this therapy. The protocol is for 4 doses over a period of time. Read press release – https://goo.gl/Zx3RiR
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
What good news! Thanks for the update, Tom.
I'm so happy to read this news, while at the same time saddened recalling the memories of my mom fighting this type of cancer as hard as she tried. For those with NET, I pray this answers your own prayers for sustaining life or cures your cancer.
@gr82balive Thank you for your kind comments. I am sorry as well, that this wasn't available for your mother. Treatment for NETs is beginning to get more research and this will help everyone troubled with this type of cancer.
Is PRRT available at the Mayo Clinic?
At a recent meeting with those in charge of PRRT at Mayo, they have 4 rooms set for it. I'm not sure if its been approved by the major insurance companies or Medicare for reimbursement. On another NET site, I saw a comment that that may not occur until June (that is not certain). Dr. Halfdanarson said they would likely prioritize patients for PRRT until they get into the full swing.
@tomewilson Thanks for that information, Tom.
@debbiegri Are you currently a patient at Mayo?
Hello All: As the PRRT treatment was approved earlier this year, I was wondering how many of our NET members have looked into this treatment.
I hope you are all doing well. Will you drop me a note and let me know how you are doing and if you are a candidate for this new treatement?
My wife Lynn as a low level of expression of somatostatin receptors. Dr. Halfdanarson had Mayo pathologists call back the slides and stain for somatostatin receptor type 2A to see how much of the receptor truly is present on the tumor cells. It turns out that its does not meet the minimum threshold for PRRT. Therefore he started her on Afinitor in March 2018.
@tomewilson Thanks for that feedback, Tom. Is Lynn doing better on Afinitor, or is it too early to know for sure? Teresa
The first MR after 3-months on Afinitor 10 mg daily showed stability to slightly improved liver tumors (50+). No major side effects. CG-A and 5HIAA all improved (not to within normal ranges however).