PRRT Clinical Trial In America

Well, here we go again. I have a new plan to fight my cancer and it looks like I will be heading to Texas. It appears that the FDA will (or has already) approved a second clinical trial at Excel Diagnostics for PRRT. That is great news for us Americans. Now, instead of traveling to Europe you can partake in a PRRT clinical trial in America and save thousands of Dollars. Not to mention that you will work with local, English speaking doctors which makes life easier. You will miss out on the beauty of Europe though. If you are interested then you can contact:

Susan Cork
Therapy Patient Coordinator
Excel Diagnostics and Nuclear Oncology Center
9701 Richmond Avenue, Suite 122
Houston, TX  77042
email: scork@exceldiagnostics.com.
DIRECT PH:  713.341.3203
MAIN PH:  713.781.6200 X3203
FAX:  713.781.6206
http://www.exceldiagnostics.com
http://www.ritafoundationhouston.org

It Is Expensive

My understanding is that PRRT is currently only used as a treatment for carcinoid cancer and Nets in Europe. This can cost about $80,000.00 to $100,000.00 dollars when you include treatment, travel, lodging and meals. That is because you must make multiple trips for multiple treatments. Now that America is an option those expenses should be cut in half. At least, that is what I am estimating. I am hoping to spend less than $15,000.00 per trip.

An Introduction To PRRT

PRRT stands for Peptide Receptor Radionuclide Therapy. When I explain it to friends I don’t say radionuclide I just say radiation therapy. As I understand it, patients can only get this therapy if they are Octreotide positive. In other words, if your tumors bind to Octreotide then you are Octreotide positive. I had an Octreotide scan when I was first diagnosed which showed that I am.

Give Me A “P”

Octreotide is a man made version of the hormone somatostatin. The Octreotide is the Peptide and the “P” in the PRRT.

Sandostatin® (octreotide acetate) Injection, a cyclic octapeptide prepared as a clear sterile solution of octreotide, acetate salt, in a buffered lactic acid solution….. Read More

Give Me An “R”

If you are Octreotide positive then that means that your tumors “bind” to the peptide being used called Octreotide. Think of these receptors as little magnets that attract the Octreotide.

The cells in most neuroendocrine tumors have an abundance (called an overexpression) of a specific type of surface receptor—a protein that extends from the cell’s surface—that binds to a hormone in the body called somatostatin. Read More

Give Me Another “R”

Once it is determined that your tumors are Octreotide positive the doctors bind a radioactive particle to the Octreotide. Depending on how well your tumors bind to, or attract, the Octreotide the tumor cells are then irradiated and begin dying.

Peptide receptor radionuclide therapy (PRRT) combines octreotide with a radionuclide (a radioactive substance) to form highly specialized molecules called radiolabeled somatostatin analogues or radiopeptides.  These radiopeptides can be injected into a patient and will travel throughout the body binding to carcinoid tumor cells that have receptors for them. Once bound, these radiopeptides emit radiation and kill the tumor cells they are bound to. Read More

(Update – Thanks to Gary Murfin) My understanding is that PRRT is administered with various radioactive substances such as lutetium 177 (177Lu), yttrium 90 (90Y) and  indium 111 (111In). As I understand it the LU-177 is being used in Texas and is one of the is less destructive to surrounding tissues than some of the other choices. If you’re ready to have your mind blown, here’s a video on LU-177.

 

Give Me A “T”

It is a therapy and not a cure. My understanding is that the common response to this treatment (LU-177) is that it halts the tumor growth for about 3 years. They measure this treatment from the time treatment ends I think. Of course, some patients see no change and others see dramatic tumor shrinkage and some patients even see the tumors die away. As they say, it affects each person differently.

My understanding is that if you partake of the clinical trial in Texas then you must go 3 to 4 times to be injected about every 6 to 9 weeks but that all depends on the condition of the patient of course. Another benefit of this PRRT trial is that it is not a localized therapy such as in embolization (click the link to learn more) but is systemic. So, if you have stage 4 carcinoid cancer like myself this will treat all of the tumors at the same time.

Note, there are other protocols, liver directed therapies, risks, side effects and other issues to consider when making decisions like these but I hope that this article has given you an overview of what PRRT is and how it works.

Keep Fighting,
Ed – To find out how to use my images on your blog for free –
Click Here

scrollwork

carcinoidcancerbadge

23 Comments

  1. That video is stunning! Do they make the medicine in Houston or do they have to import it from Germany? So glad you posted this because it answered many questions.

  2. I hate to tell you Ed, that the estimate on treatment in Europe doesn’t sound accurate to me. I had PRRT in 2009-10 and even with three trips, it was a fraction of the cost at Excel. I know things have changed but did you look at Erasmus in Rotterdam? University Hospital in Basel, Switzerland? How about India? I don’t think you will get a better deal on the price than India. Of course, it is farther than Houston but about the same climate. Dreary lodging in Houston, where I’ve lived three different times.

    If I go again (and I might) I would return to Europe, if possible. Why? Because that’s where the procedure was developed and has been finessed. They perform it daily in most places where it is offered. Also, I got excellent care in the hospital there and everything was first-rate. Even the food was good in Basel. I also went to Germany for my first of three rounds of Lutetium but I would not recommend that.

    I don’t believe Excel has any isotope but 177-Lutetium, whereas Basel uses both Lu and 90-Yttrium.

    BTW: the isotope (when I had PRRT) was made in the Netherlands but the octreotide component of Lu-Ther was made in Boston. Not sure about now. Email me if you want contact info.

    • Really? Because I had read with travel, lodging, treatment etc. it came to be about $30,000 per trip. I will look into it again. I’m curious, why not Germany?
      I did a quick look and it seems that this is pretty close for a European visit.

      air fare – $1,000 x 2 (round trip) x 2 (people) = $4,000
      average hotel = $2300 for 2 weeks
      treatment – 10 to 15k
      ————————————–
      $20,000 per trip conservatively including the unforeseen & meals
      do you think I am close?

  3. Hi Ed:

    As far as I know in Europe some of the cancer centers there are still using Y-90 and in some cases a combination of Y-90 and Lu-177, done in tandem. As published by the research done at Erasmus, the Median Time to Progression (TTP) for treatment with Lu-177 is 40 months. When treatment is done in Tandem with Y-90, some research finds that the median TTP is 54 months.

    How many treatments a person gets is really dependent upon 2 things in my opinion. The first is the scope of the person’s cancer…meaning tumor burden of the liver, distribution of the NETS in the body and lastly, the physical condition of the person. The second determinant is the protocol followed by the cancer center. At the Erasmus center in Rotterdam, the protocol has been to give the patient 3-4 cycles of Lu-177 spaced about 2-3 months apart. This approach, by the way is the one used in the Nutter-1 clinical trial that was done here and a report should be out in a month or so. At Basel, the protocol has been (may be changing now) to give the patient Y-90 for the first cycle and then successive Lu-177 cycles, depending upon the effects of the the treatment. At Bad Berka, the number and timing of the treatment cycles is dependent upon how the patient responds over time. And…if the tumors are large – such as 6-10 cms in size, then Y-90 is usually done first, to be followed by successive cycles of Lu-177, the timing of which is dependent on the patient’s condition.

    In my case I had one treatment in Sept of 2009 (Lu-177). Then, in Sept of 2011, I had a second PRRT when progression was seen in the liver. At this point in time, I am going on 49 months out from that last PRRT.

    What I have observed over the years since my first treatment is that most of the Docs who do refer patients to centers in Europe, tend to do so only after exhausting all conventional means of treatment, including chemo. The treatment becomes a Last Resort Effort. Bottom line for this approach….many patients go to Europe after going thru many surgeries, numerous ablations, trying various chemo agents, etc. etc. By the time a patient goes to Europe they are physically depleted and mentally exhausted from fighting the cancer and this in fact reduces the effectiveness of the PRRT many fold.

    As for the cost of treatment in Europe…that really can vary a lot. I think your estimate is high, but much depends on the exhange rate. At that time of my first treatment the exchange rate of the Euro was $1.55 USD. The exchange rate today was $1.11. US patients today going to a center where payment is in Euros would get a great deal..not only for the treatment, but for the travel and accommodations as well. FYI, both times I went to Germany, our trip was only for 10 days and 4 of those days were spent in the medical center and were paid for as part of the fee for the treatment…which BTW, included the cost of tests and the Gallium-68 scan.

    gary murfin
    Co-Developer of prrtinfo.org with Josh Mailman

    • Hi Gary,

      Thanks for the added info. I did not know that that the other radioactive substances were still being used. My understanding was that everyone was using LU-177. It would be great if you could provide links next time. I think everybody would appreciate it. 🙂

      As I continue to familiarize myself with PRRT, I will post more detailed information. My post is just trying to make it easier for people to understand if they are newly diagnosed or have never heard of PRRT. I think I did OK. 🙂

      Regarding time to progression (TTP), I saw quite a few different times (TTP) but they all seemed to boil down to ABOUT…3 years. Some were more (40 months) some were less. After looking over a few studies 3 years seemed about right for LU-177. This post is really an “intro” into PRRT and not an exhaustive analysis. That is what your website is for. 🙂

      Yes, the cost for treatment in Europe is difficult to get a handle on but I think I am close….but, really, it’s just an estimate since things change so much and people make different decisions. You are correct about the exchange rate….but who can predict that in this day and age? Maybe we should be getting prices in gold or bitcoins? 🙂

      It all boils down to the fact that everybody is different. Some choose Europe, some choose America, some India….some have great responses and others have poor responses. For example, it seems that Lucy does not like Germany and yet you went there. I wonder why? I would really like to know. I have also been warned privately that there is some bias toward Europe among some. I’m not implying that you have that bias but I know it’s out there.

      You know what I cannot seem to find online? Also, I cannot seem to find “disqualifying treatments”. In Texas it seems that they do not want you to have had Y-90 but I don’t know if that is typical or not. I know that my liver specialist suggested that we wait on embolization as it will allow the PRRT to get to the cancer better and we can use embolization when I get back or at another time. That would be great to include on your website if you know of any.

      Thanks for the added info,
      Ed

      • Hi Ed:

        I understand that you were not taking a Deep Dive into the world of PRRT, but some of the info you blogged was incomplete or not correct. I like to help newbies, but do not want to mislead them about the treatment in terms of its upsides as well as risks (which you did not talk about) that are associated with the treatment.

        I don’t know what the source of your info is, but strongly suggest that you read our website (Josh & Gary) to catch up with the latest about this treatment. Josh keeps the site updated in terms of the latest and greatest developments with this treatment. There is a lot going on in this arena, most importantly the finding of new peptides that are more effective in being absorbed by the receptors and using various chemo agents in combination with PRRT to enhance the tumor kill with less risk to healthy tissue. While this is more detail, it is important to know since these kinds of developments are not going to be used in the US for some time to come, given where PRRT is in the approval process.

        In your blog you stated:

        “It is a therapy and not a cure. My understanding is that the common response to this treatment is that it halts the tumor growth for about 3 years….As they say, it affects each person differently. Typically, you must go 3 to 4 times to be injected about every 6 to 9 weeks.”

        There is nothing wrong with saying 3 years…that is in the ballpark. And…each person will respond differently, but…the info about going 3 to 4 times every 6-9 weeks is ONLY applicable if you are going thru a trial here in the US that follows the Rotterdam protocol. Other cancer centers in Europe no longer follow this process because they now know that tumor burden and patient condition need to dictate the frequency (and dosage) of the treatment…only here in the US has this protocol been applied to the Trials.

        And why is this important? …the reason is — as you stated above — each person is affected differently, so zapping a person with infused radiation multiple times before knowing the full effect of the treatment does not make good sense. In fact, the research from Rotterdam (Erasmus) concluded that with Lu-177 there is a cascading effect and that the impact on the tumors can last for 30 months or longer! So in many ways the approach used in the US trials does not make sense to me, when the goal as described to me by Dr. Baum is to use the least amount of radiation to kill off the most tumor tissue. This is why after 6 years I have only had 2 treatments and potentially have maybe 6 more to go, if needed.

        This brings me to your question about how many treatments of PRRT a person can get. This is one of the very first questions I asked Dr. Baum after my first treatment. He told me that this varies by person. It all depends on the size of a person’s tumor burden (number and size of tumors) and the amount of radiation that must be administered. In my case, I was told that given the amount of radiation used in my first treatment, I could probably have up to 8 treatments — this assumed that my tumor burden did not get larger and that about the same amount of radiation was used each time. Each of us has a radiation threshold or tipping point that is different. I know of people who have had 10 treatments max. After that they went to some chemo agent to try to control the tumors. The tipping point is all about the impact of these treatments on the liver. Too much radiation and Bingo…the liver is overloaded and begins to rapidly decline. Once this happens, the end is in sight and the impact is NOT reversible.

        I have not seen this kind of info in medical papers, probably because it is variable by patient.

        The other thing to bear in mind is what I mentioned in my last message to you. This is the condition of a patient when they get a treatment. Because US doctors have chosen to hold off on sending patients for PRRT, by the time a person goes for treatment their tumor burden has grown, their physical condition has declined and their mental fitness is bad. The end result is that the PRRT does not work well.

        Another thing to keep in mind is the systemic vs. regional treatment. Usually if the tumor burden is confined to the liver, then a regional treatment is done. PRRT can be done on the liver alone with what is called an Intra-Hepatic infusion. This is a catheter that goes into the liver and delivers the PRRT. It is usually only a good idea to use PRRT when a systemic treatment is needed…meaning that tumors are in the lymph, mesentery, other organs and bone.

        As for “disqualifying treatments” — I think there can be an order to be followed in applying treatments. At least this is my take-away from knowing what has happened to other people who have had various kinds of treatment prior to going for PRRT. My observation is that the treatments to avoid are chemo embo and the spheres. The reason is that these treatments can scar the liver tissue and disrupt the blood vessels that would feed the tumors, thus making PRRT less effective. It has meant that people wanting to do an Intra-Hepatic infusion might not be able to do it because the blood vessels where the catheter must go cannot be navigated to put the isotope in!

        Don’t know about the effects of chemo agents alone or in combo…or at least have not seen anything written about this.

        Okay…there is other stuff to tell you, but will have to wait for now. Probably a good idea for us to talk on phone about why Lucy does not recommend Germany. I have known Lucy since mid-2009. She preceded me at Bad Berka by several months and we communicated a lot at that time. Feel free to call me at 253-630-0767 for follow up.

        My intent is to be helpful, not critical. I am just concerned that “correct” info be provided, so that when decisions are made, they are made based on the best info possible. I think if I was a Newbie reading your blog on PRRT…I would have walked away misinformed on some important points.

        We are all learning and medicine is changing around us, so there is always more to know.

        Take care,

        gary

        • Gary,

          Thanks for the info but most of the info you added is beyond the scope of my little “intro” post. I will change my post to reflect that it is in America that the 6-9 wks. is followed. Regarding risk and side effects. I did not cover those because this is really not about risk, reward, medical advice or any of the specific protocol. This is only an intro. Each person needs to look into these things themselves.

          In no way am I leading anybody “astray”. It is a very simple article intended to be of inform people of the trial in America and explain what PRRT is on the most basic levels. For the most part, I think I got it right. I do appreciate the corrections but they were really semantic. I neglected to add that most of these treatment options were part of the clinical trial. My fault. Those have been corrected. I also put a “disclaimer” at the end of the article that communicates that there is risks, different protocols etc. Take a look at it. I do value your opinion. Most of your comment is beyond the scope of what I intended to communicate but feel free to comment on anything. I am a very open person and appreciate all of the hard work that you have done AND THANK YOU FOR ALL OF THAT MIND MELTING INFORMATION! 🙂

          Ed

  4. Pingback: Trip One Of My PRRT Cancer Therapy - Carcinoid-Cancer.com

  5. Pingback: Trip Two Of My PRRT Cancer Therapy - Carcinoid-Cancer.com

  6. Pingback: Trip Three Of My PRRT Cancer Therapy - Carcinoid-Cancer.com

  7. Pingback: What Carcinoid Cancer Is Like For Me - Carcinoid-Cancer.com

  8. Pingback: A Quick Update About My PRRT Treatment For Carcinoid Cancer - Carcinoid-Cancer.com

  9. Thank you so much for that video, I’m on 2 drugs first month now because my tumor in my pancreas where it started was growing and the lesions on my liver also started to grow and I’m hoping to be able to do this drug in the next few months. It helped a lot and I might send the video on my medical updates to everyone so they can understand a bit better..
    Hell I’m still learning how to pronounce the names of the 2 chemo drugs I started taking almost a month ago… LOL!

    • Hi Patricia, I’m so sorry that your tumors have spread. I wrote a few other posts about PRRT & I plan on writing 2 or 3 more. 🙂 I’m so glad you found the video helpful. 🙂 What chemo are you on?

      • Days 1 thru 14, I take Capecitabine 2 pills am & 2 pills in the pm then on day 10 of the first pill I start taken TEMOZOLOMIDE 3 of them before I go to bed on days 10 thru 14 then off for 14 days. I’m starting my 2nd month Tuesday and I’ll do January for the 3 month then I’ll have another MRI and hopefully it stops and start shrinking them.
        I normally don’t read anything in doctors office’s because of my counts I bring my own reading material or crochet. But I saw this Cancer Guide on one side and you turn it over it says Understanding Clinical Trials and it was a new world open up to me!! OMG in the past days Thursday, Friday & Saturday I have found new stuff and websites and just understanding stuff and then I found your info and the video I sent to my boyfriend so he could watch it because my doctor was telling me about this PRRT trial. I don’t remember every little thing so that help him understand what I was trying to tell him.
        I was on Afinator my first doctor put me on and was on that for about a year then my doctor I have now put me on Sutent 25mg about a year and half ago until the first of November when they started growing not a lot but still growing. I don’t know how much I’ll be doing the next 2 weeks because that 1st round whipped my butt!! I could not get out of bed to go deer hunting only about 5 times it made me very tired but I got plenty of rest so I’ll see how it goes this month… But I thank you for the videos and will keep this web page on my IPAD, again
        Thank you…

  10. Sorry for getting back so late..
    Yes I have seen 3 doctors my doctor is with the University of Arizona Cancer Center almost 4 years ago.

    • Patricia, have you had monthly injections of Octreotide? My daughter has carcenoid cancer, primary was resected in small gut 3 years ago, now showing up in the liver. She had 13 lymph nodes removed at surgery and 3 were. She has no symptoms of anything and has not had any since surgery 3 years ago, but now the scan shows slow, small lesions as “growing”. SCARED!! She starts injections next week. Thx.

      Ingjerd

Leave a Reply