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!
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.
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.