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FDA finally approves PRRT!

I can’t believe it’s been over six years since I started my first round of PRRT. At that time I chose to travel to Houston, the only place you could receive the therapy in the US, and pay out of pocket for the “experimental” clinical trial. I know how effective the treatment was for me, and I’m thrilled that after all these years the FDA has finally approved PRRT so that many more patients will be able to benefit from this therapy, and with the help of insurance. https://www.reuters.com/article

Comments

Elaine
Reply

Hi Brian, Just found your blog for the first time. I was diagnosed with NETs in the fall of 2013. I’ve been part of a Lutetium 177 (PRRT) clinical trial at the Cross Cancer Institute in Edmonton, Alberta, Canada since Sept 2014. I’ll be having my 10th treatment on May 23. Are you also treated with Lutetium? How many rounds have you had? Do you also have regular injections of Sandostatin/Octreotide? I have one every 28 days. My condition is stable and some of my tumours have shrunk. Even better, I feel 100% healthy and I’m able to lead a pretty normal life.

Brian
Reply

Hello Elaine

Thanks for your message. I’m so pleased to hear that the Lu-177 PRRT has been an effective therapy for you, that your disease is stable, and that you’re enjoying a good quality of life! I too had the Lu-177 PRRT, but only four rounds, and that was back in 2011-12. My team tells me that I might still get a couple more rounds in the future if they deem it necessary.

Yes, I’m on 40mg of Sando LAR every 28 days. Been getting those injections for 13 years now. Ugh! That’s a lot of scar tissue, but it’s still very helpful for symptom control. My quality of life is good, working full time, enjoying all I can.

I wish you the best,

Brian

Elaine
Reply

Thanks Brian! I am on 30 mg of Sandostatin every 28 days. Do you find that the needle plugs quite often? It’s been happening about 25% of the time, particularly when she pokes me on the left side. Any suggestions would be appreciated. At first I was only taking it out of the fridge a hour in advance, but then I was told that it might help if I took it out earlier, even the night before. That did seem to help, especially at first.

Brian
Reply

Hi Elaine

I’ve only ever taken my injections out of fridge an hour before. Of course I’ve had problems but it’s been with the injection nurses not knowing precisely how to mix and handle the meds. I’ve been very fortunate to have close friends who are RNs administer the injections for me for the past several years. The key to success is to keep the syringe moving constantly as soon as the contents of the syringe and vial are mixed and drawn into syringe. Do not shake, but keep the syringe in constant motion by moving side-to-side and/or rolling right until the contents are injected. If the syringe is allowed to be still the contents will immediately begin to harden, thus clogging the needle.

Good luck!

Brian

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