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2+ Years on Clinical Trial

I’m so thrilled that I’ve been on the Pazopanib Phase II Trial at Stanford for over two years now! I know that things will likely change at some point in the future, but for the time being my tumors/mets are all within the stable range. There are no new lesions. My typical markers (Chromogranin A, Serotonin, U-5HIAA, etc.) are all somewhat elevated, but relatively unchanged and stable. Stable is good. Boring is good. Life is good. All of this with just four pills at bedtime. No side effects. No drama. I still get injected every 28 days with 40mg Sandostatin LAR for symptom control. I also visit my amazing team at Stanford every four weeks, and have MRIs & CTs every three months. I’m happy to stay this course for as long as I can!

Comments

eileen
Reply

Congratulations, Brian. You are always in my thoughts and prayers!!! Life IS Good!!

Brian
Reply

Thanks Eileen! 😉

Cindy
Reply

Hi Brian-

I was happy to come across your posts. My dad has been battling carcinoid for five or six years and is on Sandostatin and had a liver resection last year. Tumors are growing and he’s waiting for FDA approval of PRRT. I was encouraged to see your results from your different treatments. Hopefully he will follow your currently “boring” course:) Thank you for sharing your journey. It provides some hope!

Brian
Reply

Hi Cindy:
Thanks for your message. The FDA has got to come through with that approval soon. I wish your dad all the best!
Brian

Mary Ellen
Reply

Hi Brian,
I am recently diagnosed with NET carcinoid metastisized to my liver somewhat similar to your story. I live near Boston and visited Dana Farber last week and awaiting my first PET scan. They are still unsure of where the first cancer began. I am 53. If you could go back to your diagnosis and change any treatments or lifestyle habits what would they be? Please contact me when convenient.
Sincerely,
Mary Ellen

Brian
Reply

Hello Mary Ellen:
Thank you for your message and your great question. Interestingly it’s a question that’s never been asked of me before. Before I answer let me first say a couple things. The key to surviving this thing is to be under the care of a true NETs specialist. Hopefully your doctor at Dana Farber fits that bill. I wish I’d known to switch to someone like that much sooner. Secondly, in my experience, a traditional PET scan has never been very useful for me unless it’s radiolabeled with a marker that is specifically taken up by neuroendocrine tumors. The typical glucose marker won’t show much since the NETs metabolize about the same as surrounding healthy tissue.
As for what I would or wouldn’t do – I’d definitely have the bowel resection I had as soon as possible to remove the primary tumor. That was very helpful. My docs didn’t know for certain where my primary was either until they opened me up. The next few procedures, SirSpheres and hepatic artery chemoembolization, I’d probably skip. Those were therapies targeted at my liver mets, but the risks, discomfort and inconvenience of the procedures themselves didn’t really seem to be worth the nominal results. After recovering from surgery I’d likely go straight to a systemic therapy like the PRRT which did have a meaningful and sustained impact on almost all of the lesions throughout my body.
Lifestyle changes? Well I would have done more to stay physically fit as best as possible earlier in my battle. I’m happy to be pretty fit now, regularly going to the gym. I also probably should have done it sooner, but I had to completely give up alcohol after my surgery. My hormones were so out of whack my body couldn’t tolerate it, and it’s still my worst trigger so I don’t drink a drop.
I hope some of that helps. I wish you the best in your battle!
Brian

Mary Ellen
Reply

Hi Brian,
So glad I asked! I knew a lot of info would be found searching, some good some bad. My Doctor is one of three specialists and the only one I was able to get in with. She seems conservative, suggesting NO surgery and only octeotide shots (for the rest of my life?). PET scan is with newly approved agent dodatate and octeotide (approved last March). Still trying to get a date on that, but I think it is 85% accurate. Just scares me that they may find more cancer. You sound like you have found your right lifestyle and doing well. Your blog has been the most helpful and I am truly grateful you are there for all of us newbies! Many thanks! Mary Ellen

Hugh
Reply

Hi Brian,

I just found your site while doing research on PNET.

My wife was diagnosed with it last November.

Is there a way for me to send you a pm?

Thanks,

Hugh

Brian
Reply

Hello Hugh

Thanks for your message. You are welcome to e-mail me at brianbowe@me.com

Take care

Brian

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