First – sorry for the long post. If you don’t have time to read, here’s the cliff notes on how I’m doing…Treatment went great and I’m feeling good. (:
Now – if you’ve got time and are interested, the details of my first experience with Peptide Receptor Radionuclide Therapy (PRRT) are below. I’ve tried to provide as much detail for other NET patients with a potential investment in this up and coming therapy.
I’m always surprised at how much coordinating there is with cancer. It is a full-time job sometimes and I feel for those who don’t have the time, energy or know-how to navigate it successfully. Fortunately, I was born with persistence in my DNA. Here’s a journal of the steps it took to get to Peptide Receptor Radionuclide Therapy, the week of treatment and the week after. Consider this a glimpse into the life of someone living with a chronic illness.
Before I start that, I’ll share this video showing how PRRT targets cancer cells:
Pretty cool, huh?!?!
5/23/17 – Referred
After I got the results of my Ga-68 and my specialist recommended PRRT, he made the referral call to Excel Diagnostics while I was sitting in front of him which I was happy since I know how many directions he’ll be pulled once he leaves my vision. The Therapy Coordinator at Excel Diagnostics is Susan Cork and she immediately sent me an email indicating the documents and images I would need to be considered. This included:
- Surgical pathology report that diagnosed NET or Carcinoid
- Diagnostic reports from the last six months
- Last Octreoscan report and images
- Last Ga-68 PET/CT report and images
- Most recent lab results
- Last consultation report from the referring physician
- Last four office visit notes from current oncologist
- Current medication list
- Contact information and copy of front and back of insurance card
- New patient questionnaire
5/25/17 – Applying
I arrived home from New York City, gathered the remaining documents from my local oncologist, emailed the entire package to Susan and overnighted the image discs, which she confirmed receipt a couple of days later and indicated I should have a response by June 7th.
6/1/17 – Last Lanreotide
I was scheduled at Vanderbilt University Medical Center for my monthly Lanreotide injection. I debated on whether I should go since I knew there was a 6-week waiting period for PRRT once I received Lanreotide. But I figured I should and I did. If you’re curious about that process, click here.
6/9/17 – Accepted
I had not heard back from Excel Diagnostics and did not want to go into the weekend without hearing something, so I called Susan, who indicated I was eligible for treatment, but that she had not gotten a chance to get back with me. While I had her attention, she answered some questions and scheduled my first treatment. It was a relief to finally have a date. She said I would receive an email with lab orders and a prescription for Emend that I could take on my therapy day to help with nausea.
6/12/17 – Officially Accepted
I received the lab order and Emend prescription along with important dates to be aware of before my therapy (ie, payment due, lab deadlines, etc.)
6/13/17 – Schedule Appointment with Local Oncologist
I scheduled an appointment with my local oncologist to discuss the lab order and additional prescriptions I would need (ie, short acting Octreotide).
6/14/17 – Appointment with Local Oncologist
For the first time ever, Vanderbilt University Medical Center (VUMC) got me in fast. I met with my local oncologist, Dr. Berlin, and he was “excited” (this word again) about me undergoing PRRT. We discussed his involvement in the NETTER-1 clinical trial and scheduled the lab orders, which included:
- Comprehensive Metabolic Panel with Glomerular Filtration Rate, Estimated (eGFR)
- CBC with differentials and platelets
- Chromogranin A
- Pancreatic Polypeptide
- Serotonin Whole blood or serum
- I was a little concerned they didn’t ast for a Vasoactive Intestinal Peptide reading because that is the most sensitive indicator for me. BUT, Dr. Berlin knows that, so he went ahead and threw that in for good measure.
Then he calculated the dosage for short acting Octreotide injections, which he recommended I start taking 6/30 when my Lanreotide runs out.
A beautiful day at Cummins Falls
6/26-6/29/17 – Family Visit
My brother and nephew arrived and brought a much welcomed distraction to the road ahead. We spent the days going to the pool, racing go-karts, hiking, having water balloon fights, going to Cummins Falls and trying to convince my nephew to eat something other than Dinosaur Chicken Nuggets.
6/29/17 – Labs
I woke up early and headed to VUMC to get my labs. Per Excel’s instructions the blood needed to be drawn today, two weeks before therapy to green light treatment. Once those are cleared, they order the expensive, fancy, unapproved radioisotope to be injected into my body.
6/30/17 – Start Short Acting Octreotide Injections
Started short acting Octreotide injections. I can’t say I was too excited about giving myself a shot three times a day, but I’ll take that over the intestinal distress associated with Neuroendocrine Tumors any day. Before cancer, I couldn’t even get a flu shot without a major meltdown. The fact that I can now give myself an injection is proof that sometimes you just gotta do what you gotta do and it’s fine.
7/6/17 – Payment
Called in my $7,998 payment, which I put on my United MileagePlus credit card. On our next trip to Houston we’ll use all our miles to pay for the flights and hotels.
7/6/17 – 7/8/17 – Climb a Mountain
Drive to the Smokies with my husband and friend (and fellow cancer survivor), who I met in the Vanderbilt Creative Writing Workshop. We met 10 others at a cabin close to the National Park to hike the tallest mountain in Tennessee and stay at the Mount LeConte Lodge. Even though I was off the grid, I was very happy to arrive back to civilization and find an email from Amber Gonzalez at Excel Diagnostics detailing my schedule for the week. The full story of the hike is here.
7/9/17 – Arrive in Houston
Fly to Houston and lay out at the pool all day for a much deserved rest day. We decided to get a room at the Residence Inn Westchase. It was a little more expensive than standard hotel rooms, but there was a separate bedroom, which I thought would be nice if I wanted to nap while my husband worked. Also, once I received the treatment, we would have to sleep in separate beds for three nights to minimize any radiation exposure to him.
7/10/17 – Day 1 Tests
Walked 15 minutes from the Residence Inn to Excel Diagnostics for a MRI and renal scan to measure the filtration rate of my kidney’s. The renal scan came with a bit of drama after they wanted me to take a pregnancy test. The first two indicated a symbol that didn’t match one of the two possibilities. Perhaps I would be the first human to be pregnant with a kitten? In a dramatic conclusion, he third test confirmed I was not with child (or kitten). I walked back to the hotel in the Houston heat just in time for lunch. I was instructed to not eat any sugar or carbs for dinner that could possibly impact the next day’s PET/CT scan. That evening, we Uber-ed over to the massive Galleria shopping mall for dinner and then walked to the Waterwall, where I serenaded Fabien with a new version of Oasis’s “Wonderwall”. “And after all, you’re my water wall….”
7/11/17 – Day 2 Tests
Walked to the clinic again for a PET/CT scan where they measure the glucose concentrations. They did this by injecting of something (getting a little tired of keeping track at this point), waiting an hour, then scanning for 30 minutes. Then I got a chest CT with and without contrast, which only takes a few minutes. Done for the day. Walked back to the hotel for lunch and then to a nearby nail salon. Can’t be going into radiation with skanky toes and fingernails.
7/12/17 – Meetings & Stop Octreotide
Met with Dr. Armaghany, a very nice oncologist at Westchase Clinical Associates. She indicated that she would be my oncologist should I need anything while I’m in Houston. After lunch we watched an informational video from Dr. Deplassand and then met with him and two others doctors. They reviewed the results of the tests. Fortunately, there was nothing new, no tumor growth compared to my previous images. They also called me a robust candidate based on my tumor burden, blood profile and fitness. We then met with the Therapy Coordinators, Amber & Susan to schedule my next treatment, which will be 8/31 (conveniently scheduled before the price increase of $9,750 that occurs 9/1). We were a little bummed since this was the first we were hearing of the increase, but what’s another few thousand dollars at this point. That night, we met my old neighbor Barb for dinner, which was a welcomed distraction. This was also the day I was instructed to stop the three times daily Octreotide injections. There was a little debate over this after a friend getting treatment in Basel indicated injections should stop 72 hours before treatment, but Excel Diagnostics says 24 hours. Dr. Berlin indicated 24 hours is sufficient based on the fact that Octreotide has a life of 16 hours. Evidence if you ask 10 doctors the same question, you’ll get 7 different answers.
7/13/13 – Treatment Day
I arrived at 9am and they quickly brought me to the treatment suite. Another doctor appeared and we talked about nausea management. A hot topic for me since I am so prone. They started an IV of a steroid and Zofran and gave me a pill of Compazine. I also took the Emend prescription before arriving at the clinic. And guess what? I still got nauseous. It didn’t start until an hour after the amino acid drip began, but it came in waves and lasted until the amino acids were done (about 3 hours). The actual treatment was run for 30 minutes and was run with the amino acids 30 minutes after those started. Eventually, I fell asleep and that helped with the nausea. Fortunately, I was able to keep everything in. Before leaving, the nurse reviewed the safety precautions. I went and had my port de-accessed and we called the hotel shuttle to come pick us up. By 3:30, I was napping in my room. I woke up starving – thank you steroids. With radiation safety procedures went into effect, Fabien slept on the couch bed, I triple flushed the toilet, washed my hands faithfully and kept six feet away from people for 48 hours. The rule extends to 6 days for pregnant women and children.
7/14/17 – Last Test
Arrived back at Excel for a follow-up PET/CT, which showed the medication is exactly where it’s suppose to be. Yay! Three cheers for modern medicine. By 9:30 I was back at the Residence Inn lounging at the pool. I took a nap in the afternoon and then we went Downtown for a nice dinner and walk to Eleanor Tinsley park to watch the sunset on this trip to Houston. I did have some lingering nausea, so I took an Emend in the morning. It did linger most of the day, but was not life affecting. My only symptom, facial flushing, pretty much vanished. Magic!
7/15/17 – Home
Hooray for sleeping in until 8am. We had a leisurely morning of breakfast, laying at the pool, doing some laundry and packing up for our 2:50 flight, which was delayed five hours due to storms. I splurged on a blanket and pillow and caught up on some sleep. I had to move several times in the airport and on the plane since I seemed to be a magnet for pregnant women, babies and children.
Since arriving home, I’ve been doing pretty good. The morning queasiness lingered for about five days. I had one night where I threw-up, which was rough. Once that past, I did have some uncomfortable digestion. However, I’m happy to report that today is the first day I feel like my normal self again.
Our next trip to Houston is scheduled for 8/31 and we are planning on hitting up Galveston the weekend before for a little beach time. This 2nd trip will be shorter since I won’t have to complete the massive amount of baseline testing.
For those of you interested in the finances, shoot me a message and I’d be happy to share a breakdown of everything. Note, we did not rent a car and took the shuttle or Uber pretty much everywhere we wanted to go and it worked out just fine. And because our room had a kitchen, we made many meals and saved money by not eating out.
Prayers for insurance are welcomed and accepted. Also, THANK YOU for the good vibes during the past few weeks.