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Five-Year Plan

Six months have passed since I started the Pazopanib trial at Stanford. Last week I had my latest milestone appointment with Dr. Kunz. I’m very happy and relieved to report that all of my tumors are still stable, with no signs of new tumor activity. Another very boring report/visit which makes me ecstatic! So again the plan is to stay the course. Kathy asked some good questions this time out, and the answers were very interesting. I knew there were over 150 patients enrolled in this trial nationwide (we found out the actual number is 165), but what we didn’t know is that apparently I’m the only one enrolled in the study through Stanford. We’d also been told that I can stay in the study so long as the results are favorable, but this time Dr. Kunz let us know that the outer limit is five years. To maintain my current quality of life I’ll gladly do this for five years.

I have been experiencing a little breakthrough syndrome, but certainly nothing out of the ordinary for me. While I’m on 40mg LAR every 28 days, I haven’t been using rescue injections for several years. It was suggested that I go back to using them on an as-needed basis so I stocked up on some of the pre-loaded octreotide syringes. We also discussed Telotristat, an oral med that hopefully will be coming to market later this year, and can supplement LAR injections to help manage syndrome. Let’s hear it for oral meds!

Comments

Bob-Joanne kortan
Reply

Hi Brian, so glad to hear u are stable. We met at the last conference. I took ur advice and met with Dr Kunz. We have since had an appr and further tests. We are also stable. We are having another scan in April to help us decide if we should go back on Afinitor or wait until PRRT is approved by the FDA. We have difficult days but we have a lot of hope that there will continue to be treatment that gives us more time.

Brian
Reply

Thanks for your message. Sorry to hear you’re still having difficult days. I’m hopeful Dr. Kunz will help determine a course of treatment that keeps your disease stable or shows some improvement. I certainly wish you the best!
Take care,
Brian

Admin@theranostics
Reply

Hi Brian – your story is inspirational. We have been doing PRRT with Lutetium-177 dotatate in Perth Australia since 1995 (see the various papers by Claringbold and Turner). We perform Ga-68 Octreotate PET and if there is evidence of somatostatin receptor positivity and there is evidence of progressive disease or symptomatic disease not controlled by somatostatin analogues such as sandostatin or somatuline then we offer PRRT to patients.
Our results are better than most in the literature as we do an approach of combining short course radiosensitizing chemotherapy capecitabine and temozolamide (both oral agents) with the PRRT. This is now starting to be taken up by other centres in Europe.
We have started the CONTROL-NETS study in Australia to show that this approach is better than chemotherapy with these agents alone.
Our treatment is well tolerated and given as an outpatient. We offer this to overseas patients at much less than what is the cost in Europe or the US (one of the benefits of a weaker Australian dollar). If anyone is interested in discussing this therapy then we can be contacted via the Theranostics Australia website (www.theranostics.com.au). Sincerely hope we can help. Keep up the fight!

Mike
Reply

Going to Basel this September for my first PRRT treatment.

Polly Newman
Reply

Hi Brian – Has Dr. Kunz given you any indication when the pazopanib will be available for the rest of us? It sounds promising!

I noticed you mentioned break-through syndrome, and if it’s diarrhea, I’ve been able to completely stop mine by taking melatonin at bedtime. The serotonin and melatonin use the same receptors in the gut, so by taking the melatonin (I take between 5 and 7.5 mg) at night it fills the receptors so the serotonin that is released throughout the night can’t. So simple. I’m part of the NIH Familial Study and the doctor who heads the study said it’s perfectly safe to take. It has helped several of my NET friends too.
Best of luck!

Carolyn
Reply

Hi Brian–I found your blog because my sister has carcinoid, and hopefully will start PRRT soon. Thank you for your blog. I wanted to reach out because of a professional project I am doing in my nonprofit consulting practice. It seems like while you were in Texas you stayed in another couple’s home. My client provides such housing here in the Boston area, hosp.org. They were not aware of a similar model in Texas, can you please tell me more about how that happened, and whether the Texas couple were friends or part of a program? Thank you in advance and thank you so much for your blog.

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