Saturday, April 9, 2016

Peptide Receptor Radionuclide Therapy (PRRT) Clinical Trial at Memorial Sloan Kettering

It’s been a long time since my last post.  I have been doing a lot of procedures for the PRRT clinical trial that I am a participant in at Sloan Kettering (MSKCC). 

I was lucky enough to get into this clinical trial because my doctor, Dr. Chan at Dana Farber, called Dr. Reidy-Lagunes at MSKCC to see if there was space available  for me if I met the qualification criteria. I was happy that they could cooperate with each other even though they work at competing institutions – sometimes politics can interfere with the best interests of patients.

This clinical trial is testing the use of a new peptide (DOTA-JR11).  The goal of the trial is that in patients with positive somatostatin receptors, the DOTA-JR11 will bind to the tumors and the attached radiation Lutetium-177 (Lu-177) can kill the cancer cells. 

The clinical trial has been extremely scan intensive and I had the following two scans before even entering the trial:

  • CT scan of the chest, abdomen & pelvis
  • Octreoscan
Diagnostic Phase

Once in the trial, I had the following scans, and this was just in the diagnostic, not the treatment part of the trial:

  • Glomerular Filtration Rate (GFR) - Scan to measure kidney function
  • 68-Ga PET scan with 68-Ga-DOTA-JR11 - Scan to measure if my tumors have the right receptors to bind to DOTA-JR11
These 4 scans were all done within less than a week.  My insurance company (Aetna) routinely denies most of my scans and they did so with the GFR scan.  Dr. Reidy had to call their affiliate company EviCore who acts as Aetna’s “bad cop” because they are the entity that denies most scans, to explain that it was a safety issue and then it was approved.  The good news is that I passed these scan diagnostics as well as the blood and other tests.  

Next phase of the trial:

Treatment Phase

The first step of the treatment phase consisted of dosimetry.  This procedure is a test of Lu-177 in the body to see how much radiation it delivers to the tumors and to your normal organs, primarily the kidneys.  The procedure is to give the patient IV amino acids to decrease the amount of Lu-177 that is absorbed by the kidneys.  Then an injection of a small dose (50 millicuries) of Lu-177 is given.  The IV amino acids are given for 3 hours.  Immediately after the IV is done, the patient gets a 20 minute PET scan that shows the distribution of the Lu-177 in the body; i.e., the kidneys, the tumors and other organs.  In addition, the same 20 minute scan is done at 24 hours, 4 days, and 8 days after the dosimetry.  There is also a SPECT/CT scan done at 24 hours to see a 3-D image of the distribution of Lu-177 in the body.  This series of scans is what the nuclear medicine doctors and medical physicist (never heard of that before!) looked at when they decided what dose of Lu-177 to give me when I did my first round of PRRT a few weeks later.

You can only imagine how all these scans got my insurance company (Aetna/EviCore) into a denial frenzy!  I got letters and robocalls from EviCore practically every day for the past month as they tried to deny my scans and then approve them after a call from the doctor.  What a crazy health system we operate in!  


The dosimetry left me quite fatigued and nauseous for about a week afterward. I felt like I had the flu.  Dr. Reidy gave me a prescription for Zophran, an anti-nausea medication to take 3 times a day as needed for up to 15 days.  Of course, my drug provider, Express Scripts has set up this drug so that I can only get 12 pills at a time, meaning that it takes 4 trips to Walgreen’s to get my 45 pills.  Nice way to treat a nauseous cancer patient!

I had the first round of PRRT a little over a week ago.  The procedure was exactly the same as the dosimetry except the dose of Lu-177 was 200 millicuries.  I’ve now finished all the scans and the flu/nausea symptoms are getting better.  I’ve managed to use the same 45 Zophran pills for both the dosimetry and PRRT so as not to spend so much time on line at Walgreen’s….I’m still getting letters every day from Aetna/EviCore asking my doctor for more information and denying the post-PRRT scans….

In between the rounds of PRRT, I will be getting blood tests done every 2 weeks.
This clinical trial allows for 2 rounds of PRRT.  I believe my next round will be in 10-14 weeks.  I will have a scan right before the next round to see if my tumors have shrunk, stayed stable or grown.  If they have grown, I will not be doing the next round as the PRRT would not have worked as expected. 

I’m hoping that that my tumors shrink and am looking forward to seeing what my next scan shows in a few months.  

6 comments:

  1. It's great that you got into and qualified for this trial! I'm happy for you. It does sound like a marathon of scans! I'm curious as to why all the scans go through your insurance if it is a "trial." Are they covering just the LU-177? Hugs... Hang in there and keep us posted on your next round!

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  3. So far I have not been charged for the scans - I think my doctor is spending a lot of time explaining the scans to the insurance company. I don't think insurance is paying for the Lu-177 since that is not FDA approved. I think MSKCC is paying for some of the trial costs. I also think the NET Research Foundation also made a grant to MSKCC for this trial.

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  4. My father is flying out for this trial from Indiana. I believe he begins the first step of the treatment phase next week. It was helpful to read your experience; thank you for sharing.

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  5. Rumor has it that the clinical trial has been suspended temporarily, due to patients having low platelets.

    Could you share current trial status ?

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    1. I've heard that rumor about the low platelets. I don't know if it is true or not or the state of this clinical trial.

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