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Time for a Change

For the last few years following my PRRT in Houston I’ve been getting my maintenance labs, imaging and meds at Kaiser. That was fine so long as my tumors were stable and nothing new was cropping up. Unfortunately my tumors have started to grow incrementally and a couple new tumors have developed in my liver. I’ve also had more nagging discomfort along my diaphragm on the right side where I have a cluster of mets. Kaiser didn’t have any new or different tools in their bag so it was time to move on.

Since Dr. Wolin, my go-to NETs expert at Cedars, has moved his practice to Kentucky I wanted to find a new team on the west coast. What’s exciting is that in the last few years the NETs team at Stanford has, in my opinion, really grown and is on the cutting edge of advancements in neuroendocrine tumor studies and therapies. After attending a symposium at Stanford earlier this year and having an introductory appointment in April, Kathy and I decided we’d transfer my full-time care to Dr. Pamela Kunz at Stanford.

Dr. Kunz discussed a few different courses of treatment available to me, including:

  • Afinitor – a daily tablet – this mTOR inhibitor interferes with the growth of cancer cells and slows their spread in the body.
  • Pazopanib – a daily tablet – this angiogenesis inhibitor, in a Phase II clinical trial, is designed to slow the growth of new blood vessels to the tumors.
  • Fosbretabulin – a weekly IV therapy – this vascular disrupting agent is also in a Phase II clinical trial, but we quickly ruled out this therapy as the weekly time demands would be too taxing on my schedule.
  • Immunotherapy trial – this trial is not yet open but should be soon and is something I’m definitely interested in pursuing if and when I can.

After much discussion and advice from Dr. Kunz, we decided that the best course of treatment would be for me to enroll in the Pazopanib trial. I’ve completed the enrollment paperwork, had my prescreening labs, echocardiogram, MRIs, CT and will next week have my official trial prescreening visit with Dr. Kunz. If all goes well and I’m approved for the study I’ll be starting the new meds after a return visit on September 4. I should point out that this is a randomized clinical trial with the possibility of crossover. What that means is that there is a 50% chance that I’ll be given a placebo. I will be closely monitored every month, and have the full gamut of labs, scans, etc. after three months. At that time the trial team will evaluate my progress and a few different things could happen: if my condition is stable or improving I could continue on the drug; if my condition is worsening (tumor growth or spread) they could break the seal to determine if I’ve been on the drug or a placebo. If I’ve been on the placebo I could then crossover to the drug and the process restarts.

If however I’ve been on the drug and things are worsening then I can move off of the trial drug and begin one of the other treatment options like the Afinitor or perhaps enroll in the immunotherapy trial. The good news is that there are options and regardless of the outcome of any one course of treatment there will be others for me to try. If the Pazopanib does end up working for me then I will be allowed to continue taking that. I should also mention that throughout all of this I will continue with my monthly maintenance dose of Sandostatin LAR at 40mg (2-20mg injections).

I will keep you posted here on my progress during the trial. Here’s to options!

Comments

Ed
Reply

Hi Brian,

I just found you on the web researching PRRT. I am going to Houston as well and was wondering how you raised the money for your treatment?

Thanks,
Ed

Brian
Reply

Hi Ed:
Thanks for your message, and I wish you the best in Houston. My need for funds to pay for PRRT is what prompted me to start this website/blog. I told my story online and included a link to make donations, then reached out to everyone I knew sharing a link to my site. I was very fortunate that so many generous people donated more than enough to fully cover my PRRT. They also got together and threw a benefit golf tournament to raise money on my behalf. I also know that gofundme.com is a very popular tool for crowd-sourced funding.
Good luck!
Brian

Lesley
Reply

Please keep us posted. I am currently taking cap/tem, but may be looking for the next thing (perhaps pazopanib) in a month or two.

Tom in NY
Reply

Hello Brian,

Thank you for this very helpful and personal website. I have been considering Houston for PRRT until my oncologist told me about a clinical trial that will take place close to home. I finally get to find out the details of that trial next week, but if I get in I won’t have to worry about the costs for the treatment or the travel. The travel is what I was most concerned about because you are supposed to stay 6 feet from other people, which is impossible on a plane and then carrying radioactive clothes, etc.

Your description of your experiences has greatly eased my anxiety about a great many things. My primary was discovered in my lung in 2008 and was supposed to be cured once they removed it (with a lobe of my lung). Long story short, I had great scans for about two years when they discovered a tumor on my liver and eventually mets all over my body and bones. Based on my octreoscan they saw no uptake on my tumors so I did not receive Sandostatin until after I went to the National Institutes for Health, where they have much more sensitive scans that showed receptors all over my body (very spooky to look at). I then consulted with Dr. Wolin in KY (sorry, but your loss was my gain) and he was extraordinarily helpful. Thanks to those two consults I am now looking to undergo the PRRT therapy.

Anyway, after that long introduction, the real point of my post is that I was on Pazopanib for nearly a year. It worked well for me until it didn’t anymore and they switched me to Sunitinib. I am presently on Cap/Tem and it has also been effective, although this regimen has more fatigue than the Pazopinib and Sunitinib did. I wish you good luck with the study.

Best regards,

Tom

Brian
Reply

Hello Tom:

Thank you for posting on my site. It’s great that you’ve been able to connect with Dr. Wolin and I hope you can continue to see him (I’ve heard through the grapevine that he’s now planning to move to New York.) PRRT is a challenging regimen but it served me well for a few years and hopefully it will knock back your disease too. I have my 3-month scans next week to see how I’m responding to the Pazopanib (or placebo?) and will get the results the following week. I’m glad to hear that it helped you for a time. That’s really the journey that we’re on: find the right doctor or team of physicians who can offer up the most effective options available to help us stay one step ahead in our ongoing battle. I wish you the very best!

Regards,

Brian

JoAnn
Reply

Your website has been very helpful. I am still reading through them . I found this by searching for info on how good an octreoride scan is . I am having one next week . I had one back on 2013 when NETs were found in ileum with mets to liver. Just trying to make sure this is the best test for seeing all sites involved. I have been having a lot of pain in multi areas .. Back, neck, arms and legs …. Scared. I wasn’t sure if you are still posting or not . God be with you as He is with me.

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