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.
My wife is scheduled to begin PRRT on 3/9/2023 @ Fred Hutch – Seattle. The oncologist, after a recent Ga68 C/T scan, recommended this therapy. She has not been evaluated for receptor type 2A presence.
We understand each patient is unique – just want some general guidance.
1. After reading your post, my question is out of ignorance – in any case, should we request that the type 2A amount be checked?
2. What is the minimum threshold?
3. Is Afinitor still used?
I am not familiar with the term ‘Type 2A’. Please help me. Is this what you mean in the context of staging: Stage IIA describes a tumor larger than 4 cm but 5 cm or less in size that has not spread to the nearby lymph nodes.
Since I’m not sure of the reference to type 2A, I can’t answer the minimum threshold question.
Regarding Afinitor being used to control growth, the answer is yes. In my wife's case she experienced progressive liver disease and so has been on Afinitor for over 4 1/2 years – well past its usual efficacy. Her next treatment may well be PRRT. Sequencing of treatments is very important. You msy have already told me this, but make dure you are seeing a recognized NETs specialist in a high volume NETs center.
Please follow up with any questions.
Hello Tom: – many thanks
The term "somatostatin receptor type 2A":
I read about this in your post dated Aug. 1,2018. I understand that was a long time ago – I was intrigued by the content.
My wife's recent Ga-68 scan revealed additional lesions on the liver as well as additional NET's in hip and lower spine locations. I was wondering if the provider needs to have the staining as you mentioned in the above referenced post. I'm not expecting specific recommendations for her but just any general comments based on your experiences are appreciated.
You also mentioned Dr. Halfdanarson – we have watched several of his videos.
Note: my wife is being treated @ Fred Hutch – Seattle (formerly SCCA) by Dr. Chorian. Perhaps Fred Hutch is not quite on the same level for NET treatment as other cancer centers are.
Mark, thank you for triggering my memory.
Dr. Halfdanarson is going to check my wife for ‘expression’ in May or June to see if PRRT makes sense. Otherwise he favors cabozantinib or lenvatinib.
You could ask your wifes oncologist trying Afinitor first to see what his rationale is. You can always seek a second opinion.
Thanks for the response – we will ask re. Afinitor