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
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.
Today was my fourth and final PRRT treatment and I’m so happy to have that behind me. It was typically uncomfortable, caused a good deal of flushing, and took the usual multiple sticks to get the IVs going. Regardless of the pain, the people at Excel were as wonderful as ever.
One of the doctors spoke with me to let me know that yesterday’s MRI showed the results we wanted: stable disease and no new tumor growth. That good news of course makes everything worthwhile.
I sat through therapy with another patient from California who also sees Dr. Wolin. It was somewhat amusing because we were both passing the time reading the Steve Jobs book. When I told her I was from Gilroy she said, “Oh yeah, I go to the Outlets.” It was also entertaining today to watch the Texas sized thunder and lightning. As I’ve stated many a time, I will never miss the weather in this place.
I have the usual follow-up scans tomorrow and Friday, then fly home Saturday. I come back in three months for another round of follow-up tests. Right now though I’m very tired so I’ll hit the hay and write more soon.
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.