Trip One Of My PRRT Cancer Therapy

I’m deep in the heart of Texas and I haven’t met one Texan!!! 🙂 Everybody is from another state and all of the medical technicians and doctors are from somewhere else. I must tell you, I am disappointed. I’ve only seen one cowboy hat. Man, my stereotypes are getting shattered left and right. Where are the cows? All I see is a bunch of cars. Well, I guess I better get over it. Any way, this blog is about trip one of my PRRT cancer therapy at Excel Diagnostics. First, as of the writing of this blog, the FDA has not approved the clinical study but I am getting treated under the “right to try” law. Here’s a quote.

The bill is short and straightforward.  It simply states that, notwithstanding any law, including the Federal food, Drug, and Cosmetic Act, the federal government shall not take “any action to prohibit or restrict the production, manufacture, distribution, prescribing, dispensing, possession, or use of an experimental drug, biological product, or device that – (1) is intended to treat a patient who has been diagnosed with a terminal illness; and (2) is authorized by, and in accordance with, State law.  An “experimental product” is defined as one that “has successfully completed a phase 1 clinical investigation,” remains under investigation in an FDA-approved clinical trial, and is not FDA “approved, licensed, or cleared.”   The term “terminal illness’’ is defined as the meaning given to such term under relevant State law. Read More

Finances

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
$?             – Scans & Blood Draws *
$2,300.00  – Hotel (you need 2 beds if you are a couple for safety)
$920.00     – Full Size Rental Car
$?              – Food
$750.00     – Plane Tickets from Alabama to Texas (Round Trip, 2 people)
$  75.00     – Baggage Fees
———————————————
All in all, it cost about $12,045.00 for the first trip (2 weeks)
* 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.

First Impressions

I know that this does not count for much but this place is very pretty. I spoke with Doctor Delpassand and he mentioned that his wife had a lot to do with the decor. It is far from the clinical feeling you get at most places like this. The atmosphere conveys a feeling of caring. After all, they did not have to spend ANY money on the decor but they did. The entire place is full of beautiful murals, pretty furniture, comfortable chairs and couches. You are comfortable and put at ease. I guess it does count for more than I realized now that I think about it. It’s much nicer than plain white walls.

The people are warm and friendly and most of all compassionate. I did not meet a single person that was not caring. I never felt “abandoned” and they were always asking me how I felt, how I was doing and so on. They are such a nice group and a caring hand on my shoulder was not uncommon. I cannot say enough about them.

Week One

Note: Everything can and probably will change at some point

UG. You will be scanned and scanned and scanned and scanned and it WILL take it’s toll on you. Here’s my schedule. It actually changed a bit once we were there. They try to get you in and out so that you can leave as soon as possible. So, try to be flexible. 🙂

On Day 1
:
GFR Renal Scan – 60 minutes
WB Bone Scan Injection – 15 minutes
WB Bone Scan Imaging – 45 minutes

On Day 2:
MUGA Scan – 60 Minutes
Appointment with Doctor

On Day 3:
Octreoscan Injection – 30 Minutes
Octreoscan Imaging – 90 Minutes

On Day 4:
Octreoscan Imaging – 90 Minutes
EKG
Blood Draw
Heart Monitoring
Gallium 68 Injection – 20 Minutes
Pet/CT Imaging – 30 Minutes
EKG (Post GA-68)
Blood Draw (Post GA-68)
Heart Monitoring (Post Ga-68)
Gallium 68 Imaging – 45 Minutes

On Day 5:
MRI Abdomen with and without contrast – 45 minutes
Blood Draw (Post GA-68)
CT Abdomen/Pelvis with and without contrast – 30 minutes
CT Chest with contrast – 15 minutes

Saturday and Sunday – No Treatment / No Scans

Week Two

Monday – No Treatment / No Scans

On Day 2:
Watch video about PRRT – 20 Minutes
Meet with Doctors to Discuss Treatment30 Minutes
Meet with Susan Cork – 15 Minutes
Meet with Medical Technologists to discuss safety instructions – 20 minutes

On Day 3:
PRRT Therapy  – 4 hours

On Day 4:
Post Therapy Scan – 30 minutes

On Day 5:
Post Therapy Scan – 60 Minutes

The First week was exhausting and I was very thankful it came to an end. Between laying for hours on a hard surface to be scanned over and over and the radioactive contrast solutions it was getting very difficult to endure. I would come back to the hotel and sleep for hours.

The Second week a bit better, but let me be honest with you, the PRRT solution really took all of my energy. I know some people had less of an issue with it but it wiped me out. I had numerous anti-nausea treatments that worked for a bit but I was nauseous quite a lot. Typically, you get nauseous from the chemical cocktail they have to protect your kidneys rather than from the therapy itself. Of course, there was scanning during this week as well but not as much.

You Will Be Radioactive

This is why you need to find a hotel that allows you to sleep away from your family. It is suggested that you find a hotel with 2 beds, 2 bathrooms and that you keep your distance from your loved ones. The hotel must be “cleared” by Excel Diagnostics as being free of radiation after you leave so you must be careful. They give you tips on keeping everything free of radiation. Most of the tips involve trash disposal, bathroom habits and sleeping.

To sum it up, if you are wearing it then it must be separated from other laundry. Regarding trash, you must take it with you. Be careful showering and when using the toilet. Bring your own sheets and take them with you when you leave. Also, after you are treated, you can no longer use maid services in your room.

Finally, Excel Diagnostics gives you a list of things to do and thing not to do. Also, they give you something they call “chuck pads”. “Chuck” meaning you toss them wherever you plan to sit for an extended period. You don’t want to make the room radioactive. You will have to pay until the radiation is gone. What I did that worked so much better than the chuck pads was to use an extra sheet and wrap it around me whenever I sat down. True, you look like a star wars character but it was easier and worked for me.

Here’s what I was treated with Trip 1: LU-177 – 188 mCi

My Doctor Was Very Impressed

The people at Excel Diagnostics stayed in constant contact with my Oncologist at Duke. He was very impressed and used words like “excellent”. They also gave me a full set of records and a CD of images when I left. You can view the images with the medical image viewer that I reviewed here.

The Worst Part Of My Treatment!

I missed my son so much. My sister and her husband were nice enough to watch him this entire time but it’s not enough seeing your little guy on skype! Now, I can only hug him for short periods. Torture!!!  Well, this too will pass and soon we will be joking around as usual.

Outlook

My wife and I were lucky to meet quite a few patients with the same condition but at different stages of treatment. It seems that for most of these people that the treatment is most effective in the beginning. Also, as I noted in my previous post about PRRT, some had tumor shrinkage and others had stabilized tumor growth. I am hoping for shrinkage.

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

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28 Comments

  1. Ed,
    Thanks for sharing the details of your experience with PRRT in Texas. It was very informative. How soon after will you have scans again to see how treatment has worked? I wish you all the best!!

    • I will be getting about 4 treatments depending on how it goes. Each treatment will be about 6 to 9 weeks apart. I will get scans in round 2 and they will tell me if everything is going according to plan. I will tell you this. I feel good. Not healthy but much better than I have felt in a long, long time. I don’t know if that means anything but I hope it does. Thanks for the good wishes! 🙂

      • Ed, nice website. Who’s your Dr? My wife did prrt at excel also (it was a clinical trial but cost $60k). I heard that the fda shut down the prrt at excel? Are you receiving it as a trial or paying? Are they using any other analogs other than LU -177? Ultimately she did one round there and 4 more in Germany at Bad Berka with proof Baum. Good luck to you! Gary Bate.

        • Hi,

          I go to Duke in NC and I saw Dr. Delpassand at Excel Diagnostics. The first clinical trial came to an end and I was told that there is a second clinical trial that is pending approval. So, I am paying out of pocket which is why I listed my expenses as best as I could for everyone.

          I thought I was getting only the LU-177 but then somebody from Europe said that I was more than likely getting a mix 2 analogs. To be honest, all of that is a bit above my head right now.

          Thanks for the good wishes and I hope that I helped!
          Ed

    • Thanks Ronny! They make it so confusing! Probably deliberate. Is that cynical? We have no idea if they will pay and either does the clinic. They only promised to fight for me if we are denied.

  2. So good to hear that you’re feeling better!! I pray that this is a sign of good things to come! We love you, and we’ve got your back always!!

    • Energy is a good thing. I am officially off of the sofa! It feels like I rolled the clock back 6 months. Doing laundry, dishes, helping the boy with homework, not coughing my brains out…all good. Let’s hope it’s killing my tumors too! 🙂

  3. I hope that you do well, it’s a real shame that this procedure has been proven to work well in Europe for many years now, why the US of A is so behind medically I can’t know, Gary DX w/ Carcinoid in 2003

  4. Thank you so much for sharing. I really wanted to know what the PRRT treatment did for us. I will follow your updates. Again thank you for the information. God Bless.

  5. Thanks for the information! Glad to hear you are doing well with the treatment. I have been trying to get some answers on the different types of PRRT but I feel like I am getting conflicted answers. Is the drug you are receiving the Lu-177 or the Y-90? My mother in law has been approved for the clinical trial in Iowa, for what I believe is the Lu-177, but her local dr can’t confirm. She told me dr D’Orisios office has suggested she go to Switzerland for the Lu-177. However it makes more sense to go to Texas if it is available there as well. Sorry for the long comment and questions. I’m am just a little frustrated with trying to get information. Thanks!!

    • Hi,
      Long comments and questions are welcome! Hey, you read my wordy blog post!!!! 🙂
      I am getting the Lu-177 in TX. You can read a bit about it here
      http://www.carcinoid-cancer.com/prrt-clinical-trial-in-america/

      I don’t know anything about the different types of PRRT but I think the LU177 is better than y90 but I also heard that they might mix them in Europe. I’m not sure. Sorry.

      If you look at the previous post (link above) it tells you who to contact in TX.

      Please let me know how it goes.
      That’s why I write the blog posts…..maybe I can help others.

      Ed 🙂

  6. I’m glad you finally got a treatment that might work. Keep us posted as I might consider PRRT in my future. What hotel did you stay at in Houston? Good luck and I hope your health continues to improve.

    • Hi Beth,
      Thanks for the good wishes. Yes, I hope it works! I think it will because they said I was a very good candidate because of my Octreotide update in the tumors. I plan to post on each trip and share my entire experience. I hope it helps others. 🙂

      How are you feeling?
      Ed

  7. Ed, first experience of your blog. Very impressive! I’m still learning how to interact with it. Hubby Brad, just home from Chemoembolization of liver. He has similar history. Have been told that PRRT would not be effective due to extensiveness of disease and variability of receptors on tumors. Just tried a round of MIBG but liver tumors expanded. Interested in your coverage of DCA. Will do more research. NIH has study for Gallium 68 scans due for repeat studies should get done end of Dec 2015 after liver embolization is complete. Hoping that Dr. June’s immunotherapy research at Penn, pans out and Brad might qualify for that. Considering next systemic therapy. Maybe Cap/Tem or Sutent. Tough to get all Dr.s on the same page. Even the best specialty clinics have strengths and weaknesses. New health care laws and hospital system/ insurance coverage consolidations and changes make for a constantly changing landscape. Also always some new surprise with this disease such as tumors found at rear of retina last January. Much success with your treatment plan. keep on keeping on.

    • Hi, DCA really does seem very interesting. Right now, I’m focused on understanding the PRRT since they’re putting it in me every 6 to 9 weeks. Scary. 😀 Did your Brad have bland or chemo embolization?

      I haven’t heard of Dr. June or immunotherapy taking place at Penn. I will look into that. I do know that the carcinoid foundation has a study going on is that the same thing? Here’s a link – http://www.caringforcarcinoid.org/news/cfcf-launches-major-immunotherapy-initiative

      My Oncologist simply prescribed Cap/Tem – I was not in a study but he followed the dosage. It worked for a while. Same with Sutent but that stuff took me out of the game. I couldn’t function because of fatigue.

      Thank you for the good wishes and I hope the same for you. I will keep everyone posted on how I do on the treatment. Just one final thought regarding PRRT. You should get a second opinion regarding getting it or not. I have read that it is less effective when you have a heavy tumor load BUT after speaking with people directly via email and blogs I have found word of mouth to be the opposite.

      If you read my first post, you will see that white papers tend to suggest that 3 years without growth in the tumors is common but not guaranteed. As with all medicines and therapies, everyone has a different body and so sometimes it works and sometimes it does not. So…..we all have to make our own choices. 🙂

      I good resource is http://www.prrtinfo.org/ but be prepared for some heavy reading.
      Lucy has also posted on PRRT – http://lucysnoidblog.blogspot.com/2011/11/future-of-prrt-in-usa-0-false-18-pt-18.html?q=prrt – it is from 2011 but you should still get a lot from it.

      I hope that I helped!!! 😀
      Ed

  8. Thank you for the price breakdown. When all of the amounts are available, I’d appreciate an update to the amounts. It sounds like you are receiving PRRT under the Texas ‘Right to Try’ law. If so, why are they making you have the octreoscan?

    Husband went to Bad Berka for his first 4 PRRT treatments. I am trying to show to insurance company a good price comparison between Excel and Zentralklinik.

    • Hi EHL,

      Glad I am helping you. I have just returned from round 2 and I am trying to put together my second blog post. It’s taking a bit longer because of the way the airlines, hotels and car rental companies charge your card. It’s annoying. They charge your card with a ton of individual charges at all different dates. It’s driving me a little crazy. Also, I tried a package deal this time in an effort to save money. I will let you know if we pulled it off. 🙂

      I’m not sure why I went through the octreoscan but I am sure they would tell you if you asked. It’s exhausting to travel, get scanned, get treatment and deal with my cancer. So, I’m not always “on my game” if you know what I mean. If you would like to contact them I put all of the contact details in my first post about PRRT – http://www.carcinoid-cancer.com/prrt-clinical-trial-in-america/

      Do you mind if I ask how much Bad Berka cost? Also, do they use a different protocol there? I know that there are differences but I am a “newbie” and trying to learn. 😀

      I hope your husband’s treatment is effective and that he feels better.
      Ed

  9. Each treatment with Lu-177 is around $10,000, depending upon the exchange rate ( currently favorable) and the scans or tests performed. So sometimes a tad more, sometimes a tad less. That includes everything but travel, so it includes the 5 night stay in the hospital for the patient. The spouse has low cost options of staying in a guest room in the hospital ($15/day, no meals) or above the kindergarten a 10 minite walk away, slightly more $. Travel is typically the airfare and train to Weimar, then rely on low cost busses.

    That $10,000 does include every scan and test and labs and consults. Curious what the cost of the imaging you had.

    • Hmmm….so the price is fairly close since the LU-177 is about $8,000. I’m not sure if the imaging costs me money or not. I think it might be included but I need to follow up and ask them. I promise that I will. 🙂

        • Hi Gray,
          I chose to do it for a few reasons:

          1. As far as I know it is the best scan for detecting carcinoid cancer
          2. I thought my insurance covered it – it does not – at least so far….
          3. I am still learning. 🙂

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

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