This news may be a re-run for those of you who read regularly, but it’s deja vu worthy – my insurance company paid the first claim on Peptide Receptor Radionuclide Therapy (PRRT)! And the heavens opened to reveal a chorus of angels singing hallelujah. Assuming Blue Cross Blue Shield of Michigan will continue to pay, the fact that we won’t go broke paying for cancer treatment is darn exciting.
I could hardly believe how quickly the time flew by between my first and second therapies. This is thanks to the wonderful busy-ness of summer which included a two week vacation with my in-laws from France where we visited New Orleans and the Alabama Gulf Coast. Unfortunately, my vacation was cut a few days short because I needed to get back home for blood work to clear me for the next round of PRRT. Honestly, I probably could have done it at a clinic near our vacation spot, but as I chronicled in my last PRRT diary entry – the coordinating is exhausting.
My labs revealed a 75% tumor marker reduction, good blood counts and a high functioning liver, even with cancer currently renting space. (Raises hand for virtual high-fives…)
To keep the flow of good news coming, I was (and am) feeling awesome. Other than the 10 days after PRRT #1, I am at the yoga studio and writing desk daily with my regular gallivants around town. Basically, cancer and PRRT have not slowed me down.
So, yeah, smoothing sailing into treatment number two and if you’re a sailor (I am not) you know how quick journeys can change – waves, wind, storms…hurricanes.
I’ve already detailed my indirect aches and pains due to Harvey and Irma, so I won’t recap, but you can catch up here and here.
I will take this opportunity to give props to the team at Excel Diagnostics for being at the top of their game in the middle of their own personal chaos. Those of you who deal with chronic illness know the how invaluable this is to have a committed, trustworthy team. (Fist bumps to Excel Diagnostics)
Hurricanes, reschedules and traveling aside, on Sunday, September 10th, Fabien and I left for Houston. Arriving early, we talked of big plans to be tourists in Houston when we landed only to find ourselves napping at the Residence Inn all afternoon. Meh, whatever.
Monday, it was back to reality. I woke up early, walked from the hotel to Excel for an MRI, Chest CT and Renal Scan. It’s a surprise how I could do these tests in my sleep now. Actually, I always ask – can I sleep? Years ago, I was a little ball of anxiety. Let’s just call that progress.
Tuesday was therapy day. I met with Dr. Armaghany in the morning for a quick check-up, who shared a general update that all tumors are stable. Three cheers! We then headed to the therapy room where my amino acids around noon, the Lutetium-177 around 12:45 and by 1:15 nausea arrived. It’s strange because nausea wasn’t as strong compared to the previous time, but I pretty much spent the afternoon vomiting. As soon as the amino acids stopped, I was starving, ready for a late lunch and a nap. All of which happened.
Wednesday, we arrived back at Excel for a follow-up scan, which revealed the uptake was good. Then we met with Dr. Ali, who shared the specifics of my results, which were a little better than what was alluded to the previous day. In summary, all tiny tumors are either stable, reduced or no longer visible. They were also very happy about the 75% decrease in my tumor marker and that my kidney functions have actually improved, which, they said, is weird.
With the good news in our pockets, we stopped for some tacos on our way to the airport and were relaxing in our pajamas at home by dinner time.
Thursday, I did wake up with some nausea which slowed me down. I passed the time by watching this hilarious show called, ‘How I Met Your Mother’ (RSVPing late to that party), getting 15 minute bursts of work done and eventually ralling to do some laundry and go to the grocery store. Riveting events for you the reader, I’m sure.
By Friday, I had only a tinge of nausea.
Saturday was the worst – I slept 14 hours, but managed to be awake for a wild Saturday night of folding laundry and making dinner. Sometimes it’s about little wins, people.
Monday, I went for my Lanreotide injection at the hospital. My appointment was at 8am, which had me cringing. When I woke up at 6am, I decided I was going to do what I want. I rolled into the hospital at 10am and was out the door by 11am. Proof that appointment times are total bullshit. The rest of the day, I felt pretty meh, but forced myself vertical to met friends for dinner and the Depeche Mode concert.
After Monday, I was ready to rock and roll on my regular schedule again. High five for a faster recovery this round.
From a financial standpoint, we had to pay for the second therapy upfront. Talking with the coordinators at Excel, they will hold on to the first and second payments until the treatment is complete and my account is settled. It could take up to six months for reimbursement, which is kind of lame, in my opinion, but whatever. I’m happy to be discussing a reimbursement situation.
This trip was short and that worked for me. We stayed at the Marriott Residence Inn (Westchase) again and will continue to since it’s so convenient. We used their shuttle and Lyft to get around town and back and forth to the airport. If you’re a NET patient interested in the finances, please let me know and I’d be happy to share my spreadsheet with you.
Also, I did not take short acting Octreotide injections prior to treatment this time. I didn’t feel the need and decided I wanted the tumors thirsty.
My next therapy is scheduled for November 2nd and we’re going to visit Austin the weekend before. Send me your recommendations, people!
6 thoughts on “PRRT Diary #2: Sailing”
Good luck with everything…..Gotta love your upbeat attitude! I am just in the beginning phase …tumor out, no mets, no meds, no chemo…just at a wait and watch to see if this critter known as pNET returns and/or visits another part of my body. i feel bad complaining knowing others are going through way way more than me but from day 1 to now everything was smooth and my ONLY cog in the wheel is my primary care physicians office that refuses to resubmit a form with proper NDC codes to insurance for reimbursement. They have now succumbed to threatening me with filing negative reports to the credit bureau..blah blah blah. Again a small cog compared to others’ …..but I just get annoyed with incompetence, especially in dealing with this disease…
I love reading your blogs….again you are so upbeat….and I keep telling myself to look for the ray of sunshine amid all the clouds…Stacie, you are a ray of sunshine…here’s to you!
Thank you so much, Barb. I’m so happy to hear you’re doing well. Getting doctors on the same page certainly is a challenge – you are not alone in that :) Wishing you continued health.
Missed our coffee at the “Wash” in Nashvegas, but so glad its because of good news!
Oh man! Did you skip into and out of town? If so, I hope you had a good visit with your girls.
Stacie, I am 3yrs from first DX. I have been on inj. For a yr now. With the approval of the new med in Jan. 2018 I see my oncologist in 2 weeks, I am nervous about discussing the PRRT with him, I want a referral to Northwestern ILL. To see if I am eligible for tx. I have had no new tumor growth and no progression on existing tumors. Some have down sized and small tumors no longer are seen. I am stage IV, mets to lymph nodes ABD area , liver and one small tumor in one lung. Also tumor is occluding a few veins. I feel very good no real damaging symptoms. How do I start this journey to asking Northwestern to see if I can get TX. I could never pay for it but I have Medicare and Tricare for life.. I know this is vague , I guess I just got so excited to fall upon your journey. Any suggestions will be so greatly appreciated. Karen
Hi Karen – thanks for your comment/message and or reading my blog. It’s wonderful that you haven’t had any progression and even some shrinkage on worth your monthly injection. I’m happy to answer any questions you have about the PRRT experience or help in anyway I can. Let me know!
Thanks, Stacie Chevrier