Trip Three Of My PRRT Cancer Therapy

I have officially finished Trip Three Of My PRRT Cancer Therapy. I am getting treated at Excel Diagnostics in Houston, Texas. I have all of their contact information in my first post about PRRT. Read More. Which also has a pretty good introduction to PRRT. I will be trying to write a more advanced introduction later on. You can also read about my first trip here. In both posts I try to break down my expenses, my schedule and my reactions to the medication. You can read about my second trip here. Finally, I will be reviewing the hotels and restaurants that I stayed in during my trips. I have already reviewed the Hilton Homewood Suites where we stayed on our first trip. Read More

Excel Diagnostics is still waiting for approval from the FDA so, no clinical trial but I was lucky enough to be treated under the β€œRight To Try” law. You can read about that in my first post as well. Fortunately, there is a clinical trial at Sloan Kettering Memorial Hospital in New York that I have found out about. You can read about it here. Read More I am not sure how similar they are but it’s worth a read. I think they are testing out a new isotope called JR-11.

After my third trip to Excel Diagnostics, I can tell you that you will not find a nicer place to go than Excel Diagnostics! Everyone there cares so deeply for the patients it is worth mentioning again. I know that this is not the only reason to select treatment at a certain facility versus another but it should be part of the equation that helps make your decision. Also, some of the staff are cancer survivors and shared their story with me which I found very encouraging.

Results

After only 2 treatments my solid tumors have shrunken 22 percent!!! The doctor’s were so happy to tell me. Smiles all around the table. πŸ™‚

I Feel Like A Page Is Missing In My Book

…I WISH somebody would’ve told me this stuff in advance but nobody did. Soooooo…..I will tell you what I know so that you will know what’s going on in advance. You will meet with a doctor after each visit and you will have a more in depth meeting either at the end of trip 2 or the beginning of trip 3. For me, my reports were not ready so, we met early in trip three for the results of my second trip. I assume that we will have another meeting in trip 4 since it will be my last visit. Being flexible is a huge benefit in this situation, and I am, but I wish there was some sort of introduction meeting or a handout with a bit of detail. πŸ™‚ Not a big thing but I feel lost sometimes. I had no idea that my meeting was going to be so detailed and that they would tell me about my progress using the treatment. Hey, I’m not complaining but I would have been a bit less stressed if I knew what was coming up.

Finances

OK, back to business. The finances were basically the same on this trip except we spent less time in Texas so the hotel bill was less as was the rental car and food. Still, I will list everything as accurately as I can.

Because I am not going through the clinical trial this means that my insurance may not pay for my treatment. In fact, I am planning for the worst. Here is a breakdown of how much things cost approximately. This time, we drove home from Alabama because we knew we couldn’t get all of the Christmas gifts home without a larger car. We rented a crossover. Our expenses might differ from yours as well because we need to stop in Alabama to drop my son off at my sister’s and brother in-law’s house. Also, we did not rent a car in Alabama so, we saved money there.

  • $7,968.00 – The PRRT compound itself
  • $?Β Β Β Β Β Β Β Β Β Β Β Β  – Scans & Blood Draws *
  • $1,760.00 – United, Birmingham to Houston, Round Trip (3 people, coach) + Hotel (Best Western) It was a Junior Room with 2 Queen Beds (You need 2 beds) – we booked through Travelocity
  • $25.00 – Baggage Fee United to Houston, 1 Bag
  • $50.00 – Baggage Fee Delta to Atlanta, 2 Bags
  • $50.00 – Baggage Fee United to Birmingham, 1 Bag
  • $560.00Β Β  – Rental Car, Full Size, 4 days from Birmingham to North Carolina (RDU)
  • $350.00 – Rental Car, Houston, 1 week
  • $135.00 – Parking at RDU, 11 Days
  • $365.00 – Plane Tickets from RDU to Atlanta (round trip, 3 people)
  • $?Β Β Β Β Β Β Β Β Β Β Β  – Food (Free Breakfast at the hotel)
    β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”β€”
    All in all, it cost about $11,265.00 for the third trip (About 1 week)
    * I usually pay $1,000.00 each for Scans after insurance has covered them but, I’m not sure if my insurance will cover these since they are not under the clinical trial. So this number could go up.

My Treatment Schedule

I was scanned again but not as extensively as the first time. Here is the schedule that I followed.

Tuesday, December 15
9:30 am – GFR Renal Scan – About 60 minutes
10:30 am – Bone Scan Injection – About 15 minutes
11:15 am – CT Abdomen and Pelvils with and without contrast – About 30 minutes
12:30 pm – Bone Scan Imaging – About 45 minutes

Wednesday, December 16
10:00 am – Meet with Dr. Delpassand to Discuss Treatment Results
11:00 am – Meet with Susan Cork to schedule Next Visit – About 15 minutes
11:30 am – Prep for PRRT
12:30 pm – PRRT Treatment

Thursday, December 17
9:00 am – Post Scan – About 60 Minutes
10:30 am – Meet to discuss this weeks treatment

Friday, December 18
8:30 am – Post Scan – About 30 minutes

A Funny Thing Happened To Me On The Way To Get Cancer Treatment

So, it’s the last day and I am about to be set free!!!Β  Everybody is teasing me saying if I don’t behave they will make me have more scans. πŸ˜€ I’m laying there and I’m waiting….waiting….there’s talking in the hallway. I am in the room and then the technician comes in and asks me to switch rooms. OK, it doesn’t matter to me. They start joking that I broke the scanner. πŸ™‚ I am in the scanner for a bit and it quits. Hmmm….I wonder what’s going on. The technician says that they had a bit of a problem and need to start again. I’m fine and he goes on with the test. In this scan you must keep your arms raised above your head. I feel a metal bar to grab onto. Awesome! My shoulders are killing me. I am hanging on for about 15 minutes or longer and the entire machines stops and resets. That bar is the emergency stop bar for those patients who get scared and panic. I have to start over. Yes, seriously. The technician starts apologizing. Of course it’s not his fault…I grabbed the stupid bar. He starts laughing and thanks me for my patients and tells me that it’s not the first time this has happened and remarks it’s a poor design. Ug. Well, we laughed and turned a short scan into a long ordeal. Perfect. πŸ˜€Β  Onward and upward, right?!

Each Treatment Is Harder To Endure

Well, I am finding out that each treatment seems to be much harder for me to endure than the last. I was so sick during this third treatment. This time, I had diarrhea and nausea much worse than the second trip. Thank goodness the people who administer my treatments and the doctors are so compassionate. They really made a difference. I stuck around until I felt that I could go back to the hotel and then slept from about 3 or 4 in the afternoon until the next day without waking up. It might be the increased dosage or maybe my body is getting to a point where I can not tolerate the treatment as well. I’m not sure but, it is really getting difficult.

Here is a list of what I was treated with.
Trip 1: LU-177 – 188 mCi
Trip 2: LU-177 – 200 mCi
Trip 3: LU-177 – 202.23 mCi

22% Is Something To Celebrate

We returned to Alabama, got to see our son and we all talked about how great 22% tumor shrinkage was. I answered tons of questions and we celebrated. Soon, I will be off to get my fourth and final PRRT treatment for my carcinoid cancer. I told David, my son and he was so happy. At first, he liked seeing his aunt and uncle and visiting for weeks at a time but I guess that’s getting old now. He misses Lisa and myself and worries about my cancer. The first thing out of his mouth when things settled down was, “When is your next trip, Daddy?” and “I hope you feel better now with this medicine.” It’s heart breaking to hear your 8 year old son say things like this. David and Lisa, I fight for you! I will not give up. I love both of you.

Stay strong and keep fighting,
Ed – To find out how to use my images on your blog for free –
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7 Comments

  1. great news Ed, are you starying to feel better yet? my NET symptoms all reduced dramatically but it damaged my platelets. I can live with that I have been given pills to bring them up so I can have my heart valve replaced, it was damaged by the carcinoid NETs. I was told my condition will continue to improve for several months after the end of treatment. I hope this is true for you as well. It seems to be money well spent for you. long may you improve. love and prayers for you and your family Christine.

    • As soon as I got back to the house…after a little recuperation time…I walked down the giant hill in my yard and back up again. That is huge for me. Previously, I was in a wheel chair to get my first treatment of PRRT in Texas. Now, I am up and down the hill. πŸ˜€ The docs said that I should continue to benefit from the treatment for quite a bit of time….and then said “hopefully”. Everyone is different, right?! They are optimistic though. πŸ˜€ Thanks for the prayers. We believe in prayer!!! πŸ˜€

  2. Ed, thanks for the cost breakdown. It would be helpful to see all medical expenses involved in one treatment, all of the scans, labs, everything. I am putting together a cost comparison of PRRT in US vs. Germany. Almost $8000 just for the radioactive isotope or are other costs rolled into that? Seems to be a high mark-up. Very glad you are getting great results.

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