Trip Two Of My PRRT Cancer Therapy

Well, I have returned from trip two of my PRRT cancer therapy for my carcinoid cancer. If you are not aware, I am getting treated at Excel Diagnostics in Houston, Texas. You can read about my first round of treatment here. Also, I have updated my first post with the dosage of LU-177 that I was given. I will keep all of this information as up to date as I can. I am also trying to put together an advanced introduction to PRRT that expands upon the little I was able to share in my PRRT Clinical Trial In America post.

Excel Diagnostics is still waiting for approval from the FDA so, no clinical trial but I was lucky enough to be treated under the “Right 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 am very happy with Excel Diagnostics. I cannot tell you if it is the right choice for you medically but I can say that everyone that I have spoken with is very impressed with them. Everyone that I have met is caring and compassionate INCLUDING EVERY DOCTOR that I have spoken with. Even the secretary looked in on me! Also, by trip two you will begin to remember everyone by name and they begin to remember you. That makes it much nicer….especially when they remember you. πŸ™‚

Results

Um, brace yourself. My disease is stable. The tumors have stopped growing!!! There have been a lot of joyful tears shed. πŸ˜€ I will tell you, time really stands still when you are about to hear the results from the doctor. The doctor comes in and boom, everything goes into slow motion. Let me describe the scene.

First, he is a very dispassionate man. Not uncaring but he has a great poker face! Especially when you are delivering good news! Cracked me up. OK, so he’s going on and on about my history and my brain is looking for the fast forward button….there is none. Then he reviews my current treatment…VERY METHODICALLY!!! Oh my God. Then he looks at me and says “Regarding your tumors….you have stable disease.” (no smile) Then because I was silent he says “All of the tumors stopped growing.” (no smile) …..until I threw a party in the office. If you haven’t figured it out yet…I’m a little nutty. πŸ˜€ So, yes!Β  Whooooohooo!!!!! I went nuts, my wife laughed at (and with) me and the doctor finally smiled. I should’ve hugged him. Shake ’em up a bit. Heh. I’m a hugger. πŸ˜€

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.

  • $7,968.00 – The PRRT compound itself
  • $?Β Β Β Β Β Β Β Β Β Β Β Β  – Scans & Blood Draws *
  • $2,105.00Β  – Package with Air (Round Trip Birmingham to Houston) and Hotel (Air Fare approx. $450.00+ taxes) Which leaves about $1,655.00 for the Hotel (Best Western) It was a Junior Room with 2 Queen Beds (You need 2 beds)
  • $375.00Β Β Β Β  – Premium Size Rental Car
  • $645.00Β Β Β Β  – Plane Tickets from North Carolina to Atlanta (round trip, 2 people)
  • $200.00Β Β Β Β  – Baggage Fees
  • $?Β Β 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 $11,325.00 for the second 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.

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

Monday

9:30 am – GFR Renal Scan (60 minutes)
10:30 am – Pet Injection (15 minutes)
11:30 am – Pet Tumor Imaging (30 minutes)
12:45 pm – CT Abdomen/Pelvis with and without contrast (30 minutes)

Tuesday

11 am – Appointment with Dr. Armaghany
1:00 pm – LU-177 Preparation
2:00 pm – LU-177 Therapy

Wednesday

10 am – Post Therapy Scans (60 minutes)

Thursday

9:30 am – Post Therapy Scans (30 minutes)
10:00 am – Meeting with Dr. Hamidi (15 minutes)
10:15 am – Meeting with Susan Cork and Crystal
11:45 am – Amino Acid Clinical Trial

No Invoice Or Reminder

Well, I do have a warning and a minor complaint to discuss. It seems that the entire scheduling and process for ordering the LU-177 is done manually. Yes, in this modern age there is not an electronic process in place to make sure nothing falls through the cracks. Um, something fell through the cracks.

Previously, when we went to Excel diagnostics, they told us to bring a check and so, I assumed, wrongly that they would expect the same form of payment for the second round. Not so. They called us two nights before we are scheduled to leave and asked for payment the next morning. What?! $8,000.00 due by tomorrow or no treatment. Um, where is my invoice or a friendly reminder…phone call?! I don’t need that kind of stress.

The problem boils down to the fact that they are waiting for all of the labs to be returned before they can order the LU-177 and schedule your visit. Most of these labs are done BEFORE you leave for treatment so, the dates hinge on these labs. This affects the date that they choose to order the LU-177. So, if your labs are returned late then your entire schedule is impacted including the order date for the LU-177 and ALL OF YOUR RESERVATIONS!!!! Β  Also, the $8,000.00 is typically due 1 week before so that they can order everything. We got it done but yeesh!!!! So, you have to be extra vigilant with them regarding payment. You must make sure that your payment gets there 1 week early.

The silver lining in this cloud is that we learned more about how they bill and how the insurance works and how they schedule. So let me share as best as I can.

The first thing you should know is that the payment you make is made to the RITA Foundation and not Excel Diagnostics. RITA foundation is set up as a charitable organization that works with Excel Diagnostics. The RITA Foundation then pays Excel Diagnostics. The Rita Foundation works with your insurance company to try to get the bills paid and they told me that they will fight for you. Also, they are a charitable organization and will work with patients who have financial need to make payment easier. I am in the process of filling out this paperwork.

So, make sure that if you choose Excel diagnostics for your PRRT cancer treatment that you remind YOURSELF to pay because you will not get an invoice or a reminder or any other form of bill until just before you have to leave. It’s really not the best of policies. Of course, we handled it but not without running around last minute. This time around we wrote a check in advance and handed it to them to be cashed when my visit was a sure thing. They still have not cashed it. You just have to remember that you wrote that check but it is much easier. You can also call and ask them to tear up the check they have morals.

The Radiation Had A Bad Affect On Me

The doctors upped the dose of radiation from what I was given the first time. The first that time I was given radiation it had a bad affect on me. I thought I was having a panic attack in the hotel room. I had shortness of breath and I had what felt like a “panic” overcome me.

When I was given my second and stronger dose it hit me right there in the room. The doctor was called and explained that I was not having a panic attack. He explained that unless I was prone to them, which I told him that I was not, it would be very unlikely. They took my vitals and every single thing was normal. How could that be?! I felt like my heart was going to burst out of my chest. He said my body was just having a hard time with the chemical and gave me some water and told me to walk a bit. I did but felt better sitting down. Within a few minutes, maybe 15, it started to subside and I went back to the hotel around 5:30 pm. Within 30 minutes I felt better and fell asleep until the next day. That stuff really kicked my butt. Oh, I forgot to mention….he was so gentle and compassionate. He really impressed me. πŸ˜€

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

Sitting, Sitting Sitting

Finally, I participated in a clinical trial for a new combination of amino acids that make you less nauseous and are supposed to protect your kidneys better. I sat for an additional 4 or 5 hours but I’m glad that I did it. It was good for me and, I hope, good for future patients. I will try to learn more about this for you and post that in the future. It’s really, as they explained it to me, the same ingredients but with different ratios.

Stay Strong!,
Ed – To find out how to use my images on your blog for free –
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14 Comments

  1. All medical facilities should have the compassion you describe in this post. I will never understand the lack of that some in the medical field show. Dale has faced Doctors like that also. It made me so angry. Keeping my fingers crossed and praying for trip #3’s results to be even better!!

  2. As all of my met-Liver tumors have been stable since I had the pesky, primary ileal tumor and the met-mesenteric tumor and 39 lymph nodes (9 of which were malignant) removed nearly four years ago, I haven’t had to go through your ordeal. I do learn so much from you and appreciate your being so disclosing through it all. Sounds like a lot of good news, which makes some of the other stuff more annoyances when there is more LIFE. Hugs.

    • Thanks Coral. πŸ™‚ Yes, good news!!! I wish I could’ve had surgery but it was not in the cards….but hey, maybe the tumors will shrink enough that they will change their minds. πŸ™‚ That’s what I am praying for and more time for better treatments. πŸ™‚

      When Lisa and I talk about some of the other stuff we always talk about those comedy movies where the guy is standing there at the edge of the beach and a speed boat goes ripping away and the water ski handle catches on one foot. Have you ever seen those? The guy goes ripping along with one foot in the air but never manages to smash into anything. That’s us. πŸ˜› We are HANGING ON!!!!! HA HA HA!!!!

      Hugs back and Merry Christmas!!!

  3. Ed, very pleased for you.
    The information that you are passing on to us if of great value. Thanks very much.

    May you have the best possible outcome,
    Cy

  4. Hi Ed, Your reaction sounded like a mild carciniod crisis. I have had the same treatment in England and my tumours shrunk. I was given an octriotide infusion before during and after treatment as they knew a crisis was a possibility. Ask them next time if is possible this is what you had. Great news for you it working, I also went on trying treatments for ages with nothing doing any good. Have a great Christmas with your family. Christine

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