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
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!
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 had my final post-scan today, and we got our hotel room swept with the geiger counter. Everything is a go for us to return home tomorrow. Kathy and I are both anxious to get on that plane and get back to Gilroy.
The therapy on Wednesday went pretty well. I had the expected pain, flushing and overall discomfort with the amino acid drip. The radiation infusion went off without a hitch. It only took three sticks to get two IVs started, which is a great batting average with my arms.
Yesterday I felt better than I did immediately following my first two treatments. Today, not so much. I’m feeling queasy, tired, weak, and dealing with lots of flushing. The supposition is that all of this is brought on by the cancer cells getting fried and thereby releasing more of the hormones and other junk that make me feel lousy. I know I will start to feel better in a couple weeks, but for now this is miserable.
I’m three quarters of the way done with PRRT. There’s no question that all of this is more tolerable knowing that it’s having a positive impact. As I’ve stated before, however, I really look forward to getting that last treatment behind me late next month so I can really begin to recover without getting knocked back down.
I’ll be sure to post again sometime next week when I’m feeling a little better. Take care.
We’re huddled in Houston where it was a brisk 47 degrees today, a full 60 degrees cooler than our trip in August. This time I asked for the blankets while I was in the scanner for 20 and 30 minutes at a time.
Today’s scans were a renogram, to make sure my kidneys are functioning well to flush the radiation; and a bone scan to check for mets. Over the next few days I still have an MRI, CT, and several Octreoscans which measure the uptake of the radioactive material by my tumors. It took four sticks to get my IV started today. UGH! I hate IV’s. I have a bunch of lab work tomorrow morning and I’m really hoping they can find a vein on the first try. We’ll get the results of everything when we meet with the doctor next Tuesday afternoon (the appointment got switched from Monday).
Kathy and I love the staff at Excel Diagnostics. As miserable as all of this is for me, the people there really make it okay. We get big hugs like we’re old friends and we laugh and joke our way through the day. Thank goodness for friendship and humor. Speaking of which, we had a wonderful time today meeting Candy, a kindred spirit who has been going through all of this right along with me. A pancreatic NET from SoCal, she had surgery similar to mine at Cedars nearly three years ago and started PRRT here about a year ago. Done with her therapy, Candy’s back in Houston for some follow-up scans. She has been a constant source of inspiration for me, and someone that Kathy and I have both leaned on. We get to spend more time with her tomorrow and we’ll all grab some dinner together.
Mary & Russ are great hosts and we feel right at home here. It’s great to have a place to just relax and unwind in the evening. I think if we had to stay in a hotel for two straight weeks during this I might go crazy.