PRRT Diary #2: Sailing

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!

 

Waiting Out Hurricane Harvey

ORIGINAL POST: 8/27/17
UPDATED: 8/30/17

My blog has been quiet these past few weeks. Why? Because I’ve been gallivanting around the southern United States having fun and enjoying summer.

Not only am I feeling great, but there are exciting developments in the recent cancer saga. I returned home from a fantastic two-week trip to New Orleans and Orange Beach, Alabama to discover my insurance covered the first round of PRRT. Hip Hip Hooray! And in even better news, last week’s blood work revealed a 75% tumor marker reduction. This wasn’t a surprise considering how I’m feeling and the significant reduction in my only symptom of facial flushing.

My husband and I decided to take advantage of our good luck and plan a weekend in Galveston Beach before my next scheduled therapy on August 31st.

“NOT SO FAST,” said the universe.

I received a call Thursday from a Coordinator at Excel Diagnostics giving me a heads up on potential therapy delays due to the approaching hurricane. I’m a little embarrassed to say this was the first I was hearing of the situation. See, I’ve been trying to shelter myself from the news because I don’t need any more stress.

But with this development, I tuned in and decided a trip to Galveston during a hurricane was pointless. Ever the planner, I quickly came up with a back-up vacation, which was to take our scheduled flight to Houston Saturday morning and drive to Dallas for the weekend. We held our breath as we headed to the airport with notifications alerting us that we were “On Time”, but 30 minutes before our departure, the flight was cancelled.

Not too worry. I had a Plan C. So, we rented a car in Nashville and are taking a little southern road trip. I’ve always wanted to visit Memphis, Little Rock and Dallas (said not many people).

Last night we stopped in Memphis, got a room at the Peabody and bounced around the lively city on a Saturday night. Today we drove to Little Rock  and visited the Clinton Presidential Library. Tomorrow the plan is to drive to Dallas for more visiting while watching the conditions from (not too) a far. Plan C included hopes that the situation would improve by Wednesday when I’m scheduled at the clinic.

NOT SO FAST…

I can rationalize with myself that worrying about things outside my control (ie, cancer and hurricanes) is a waste of time, but  I can not help but be selfishly stressed over the uncertain timing of my next therapy.

But the truth is that I/we am/are not powerless. We can pray. If you are not a prayer, just replace the word with send good vibes, thoughts, positive energy, etc. The people of Texas need our prayers, especially those in harm’s way and those who will experience medical emergencies. We need to pray for the people whose medical treatment and surgeries will be delayed because of this catastrophe, especially those who are critical. We need to pray for those who will not have the financial resources to recover from such an event. We need to pray for our government, rescue and medical workers who selflessly sacrifice themselves for others.

This has been (yet another) reminder how out of control we really are when it comes to nature and science. We all hold dual citizenship in sickness and health and in safety and harm no matter our color, religion, bank balance, location, gender, orientation and level of power.

So, after all of those prayers, if you have an extra I’d gratefully accept them as I watch and wait from Little Rock tonight and Dallas tomorrow.

***UPDATE: 8/30/17***
Seconds after we crossed the Arkansas-Texas state line, I received an email from Excel Diagnostics rescheduling my treatment to September 12. It was a relief and a disappointment. Still driving towards Dallas, we debated if we should continue and try to get a flight home or just turn the car around. After several failed attempts to call the overwhelmed airline for our options, we decided to drive. By taking turns every couple hours, podcasts, a book on tape and making calls to change our plans, the eight hour drive went surprisingly fast. Fortunately, we were given full refunds for all our reservations, so all we were really out is the time and effort.

My first therapy took a lot of coordinating and I felt good this one was going smooth until the hurricane hit. My heart breaks for those who are not strong enough, too sick and/or don’t know how to navigate this maze. I also feel guilty for complaining when there are people in Texas who’ve lost their homes, animals and loved ones. It will only take me a couple days to re-plan for my next therapy, but it will take some years to recover from this.

“We need each other, and we must care for one another.”
Bill Clinton, 1993 Inaugural Address

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Tonight’s beautiful sunset over Downtown Little Rock

PRRT Diary #1: Coordinating

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.

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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.

IMG_39917/10/17 – 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.

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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.