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
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!
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!
I’m three months into the Pazopanib trial at Stanford with Dr. Kunz, and today was my first scan-review visit. Last week I had my usual MRIs of abdomen and pelvis, plus CT of chest. I was very pleased to learn that the scans showed no new tumors, no tumor growth, and even some minimal shrinkage (2.4%) of a couple of the larger “index” tumors in my liver. Woohoo! A very boring report, and as anyone with NETs can tell you: boring is good! I’m feeling pretty good on a regular basis, and my quality of life is good, so this really is welcome news. The only recent hiccup was over-eating on Thanksgiving which caused a lot of pain and made me feel awful, but that was self-inflicted so all is good.
The plan moving forward is to stay on the blinded trial for three more months. Given the promising results the presumption, or at least the hope, is that I’m actually on the med and not a placebo. I’ll continue with follow-up visits every four weeks, and then another round of scans in three months.
We’ll also be seeing Dr. Kunz and several other NETs specialists on January 24 at the 2016 Neuroendocrine Tumor Patient Conference at the UCSF Mission Bay Conference Center. This is an excellent event with lots of good information. Kathy and I have attended annually and are always glad we did. If you’re in the Bay Area that weekend I strongly encourage you to attend. Admission is free, but you need to register online in advance. Hope to see you there. Happy Holidays!
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!
I haven’t posted in awhile (such an original blog line) but there hasn’t been a huge reason to do so. No news is good news. Things are indeed stable for me on the carcinoid front. In January I had my routine MRIs and lab work. The imaging showed that my tumors are stable and that there is no new growth or spread. I always love to hear that news! It’s so odd though, even after doing it for so many years, living life in these 6-month cycles then waiting to hear what the imaging shows.
My labs were in a solid range. My 24-hour urine 5-HIAA result was 19.1, which though technically elevated is a great number for me. I stayed off my PPIs for a few weeks and got a ChromograninA reading of 5.8 which is within normal. The only marker that was really elevated was Serotonin at 1142. That’s quite high, even compared to my typical results. The plan is to increase my monthly Sandostatin LAR from 30mg back up to 40mg to see if that helps pull the reading back down. I was on the 40mg dosage prior to PRRT. The only real downside is that it means two painful injections instead of one each round. I know I can’t complain because many of you are on much higher dosages.
I continue to get messages from other patients and caregivers or family members through this site, and am always happy to talk or just listen. I appreciate being able to help in whatever small way I can.