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!
Seven years ago when I was first diagnosed with carcinoid by an endocrinologist I was scared and didn’t know what to expect. The ensuing weeks of scans, biopsies, lab work and visits with an oncologist left me even more frightened, and saw my expectations run the gamut from “maybe this thing can be surgically removed and I’ll be cured” to “this thing is incurable and I’ll be lucky to survive five years.”
This past week Kathy and I spent two days in LA at Cedars-Sinai where I had follow-up imaging and lab work. It’s been about six months since my last round of PRRT in Houston. I was expecting results that just showed my disease is stable with no new growth. Instead Dr. Wolin and the radiologist were ecstatic to discover from the MRI that all of my tumors were still shrinking. That’s right: six months later and the PRRT is still shrinking all of the tumors in my liver, lung, diaphragm and lymph nodes. This is the best news we could have hoped for!
Now I expect to still be around for awhile, and keep up the fight against carcinoid!
Kathy and I are hanging out at Houston Hobby airport waiting for our flight home. We’ve been here since Monday for a routine visit three months after my final round of PRRT. I had several follow-up tests and exams at Excel Diagnostics including a MUGA scan, renogram, bone scan, MRI, CT, and octreoscans. I also had the gamut of lab work last week. All of the results are good. The imaging shows continued tumor death in my liver and other areas. Some areas of tumors in my lymph nodes and diaphragm are stable. There is no evidence of disease in my bones. My kidney function is normal, and there is no sign of toxicity in my kidneys from the PRRT.
A couple of the most dramatic findings are that the overall tumor bulk in my liver is down to about 25%. A few years ago as much as 40% of my liver was involved with cancerous lesions. The doctor showed us the MRI of my liver and the difference from then to now is amazing. Also great is the fact that my neuroendocrine tumor markers are all the lowest they’ve ever been. These include cga, neurokinin a, serotonin and 5HIAA. That last indicator is the one that surprised us the most because it’s what helped to diagnose me with carcinoid back in 2005. At that time my 5-HIAA level was 87. The highest that indicator has been in the last six months was 55. My test last week showed it at only 15.
The hope now is that this therapy will continue to work over the next several months to further reduce tumors, and that I can enjoy up to five years (or maybe more?) of tumor free progression. I will continue to have follow-up scans and tests on a regular basis. We still have to work out the details but I should be able to have the majority of that work done at Cedars-Sinai in LA rather that having to return to Houston.
We’re so thankful AGAIN to our wonderful friends Mary and Russ who opened their home to us this week. We feel like part of the family and really enjoy our visits with them. While we won’t miss the humidity here, we will miss the people and the great care. I feel so fortunate to have had the opportunity to receive this therapy.
Kathy and I just returned home from a quick 2-day trip to Southern California. I had some scans and tests at Cedars-Sinai yesterday and today, then we met with my oncologist, Dr. Wolin, late this morning. The purpose of the trip was to follow-up after completion of PRRT in Houston. The great news is that Dr. Wolin said he was very pleased with the results! The imaging showed that many of the tumors in my liver and lymph nodes have shrunk. Other tumors have remained stable, and there are no signs of new tumor development. These are very good results and prove that the PRRT was effective.
I’m so happy that this journey we first decided to undertake last May has paid dividends. It feels great to be at a stable place with my health for the time being. I’m slowing regaining my strength and energy and feel much better than I did just a few weeks ago. I return to Houston in early May for a quick follow-up visit, then back to see Dr. Wolin again in late May. The hope is that continued monitoring will indicate things are status quo for some time to come. I’ll keep having my monthly injections to help with symptom control, though a little more good news is that the dosage will be reduced so I only need one giant, uncomfortable injection monthly instead of two.
Thanks for checking in and following along. I’ll post more as there’s news to report. Take care.
I fell in love with Steve Jobs in high school. Well, not Steve per se, but Apple Computer. That was when I first got my hands on an Apple II in math lab. I carried 5-1/4 inch floppy disks in my PeeChee folder like they were gold. Over the years, and after owning so many Apple products I’ve lost count, my affection for Steve and all things Mac has only grown. I’m proud that the bottom of every page on this website says “Made on a Mac”.
So when I found out a few years ago that Steve Jobs was suffering from the same rare nasty form of cancer that I have I was devastated. It’s widely misreported in the media that he had pancreatic cancer. I can understand that since everyone is accustomed to hearing those words and knows how serious that diagnosis is, so it’s easier for the public to digest. In fact he had neuroendocrine tumors (NETs), with his primary tumor in his pancreas. Because his cancer started in his pancreas it wasn’t called carcinoid, like mine which started in my small intestine, but it’s the same cancer – just a different organ. Like most NETs his metastasized to his liver, and the rest of his story has been fairly well reported. I actually applauded during a report on CNN last night when a doctor correctly said the words “neuroendocrine tumors”.
Many of us in the NETs community are conflicted about Steve. I know that my fantasy was for him to hold one of his iconic press conferences and announce, “I have NETs and I’m investing a billion dollars of my own money to find a cure!” At the very least we hoped that he would open up and share the details of his own battle, becoming a flag bearer for our cause. Yet I can well understand why he didn’t want to be that guy. I know how difficult it was for me just to start this website and “go public” with my own story. I empathized with his plight.
It’s really hard for me when someone I know succumbs to carcinoid. When someone larger than life loses his battle it’s no less traumatic. Rest in peace Steve, you will be missed.