Well, I’m back and I’m sorry for not posting as much as I used to post. This cancer really has a way of sapping your energy! Still, here I am posting on trip five of my PRRT cancer therapy! 🙂
A Little Background
As you know from a previous post, my tumors started growing again and quickly enough to alarm my oncologist. In fact they grew quickly enough that all of my previous tumor shrinkage, about 33%, grew back. 🙁 After speaking with my oncologist, and then with Dr. Liu at the Rocky Mountain Cancer Center, I decided to go for bland embolization of one of the larger tumors in my liver. Dr. Liu suggested that I follow up with PRRT.
I was told about 50% of people who get this surgery have almost no pain and the other half, lucky me, deal with quite a bit of pain. Of course, I fell into the half that gets all the pain. LOL – that’s the way the cookie crumbles, huh? After meeting with the doctors at Excel Diagnostics they are thinking that my pain may have been from my pancreatitis and not the tumors. I’m getting a blood test to see if I have those indications. Stay tuned! 🙂
In the past, I paid out of pocket for most of my PRRT treatments because I’ve had trouble with my insurance company covering it. If you’ve seen my previous posts on PRRT then you will know that the cost of the PRRT by itself was about $8,500.00. Which is a huge expense when you consider the fact that you will have to do it 4 times AND you need to fly, rent a car, get a hotel and so on. In the end, my out of pocket expenses were about $12.000. Click to read about my first post (the intro), second post (my first trip), third post (second trip), fourth post (third trip) and the update on the third trip, fifth post (fourth trip ~ about 2 years ago).
Now that the FDA has approved PRRT it seems that the cost has gone from about $8,500.00 to around $62,000.00. Yes, you read that right! $62,000.00 for a single treatment! At least that is what I’ve been told. My understanding is that there is only a single provider of the drug authorized by the FDA. Previously, many providers supplied the substance used for PRRT but now there is only one. I have no idea as to why this is the case but, that is how it was explained to me. So, if you’re insurance will not cover PRRT then paying out of pocket is probably not going to happen unless you’re a crowd funding genius! Lucky for me, my insurance did cover it but I am told that the insurance companies keep changing things. You will probably want to double check with your insurance company before you make any definite plans. I called down to Texas quite a bit to make sure we were covered. After all, these medical facilities make you sign all sorts of legal paperwork saying that you will pay if your insurance backs out. The last thing I need is a medical bill for $62,000.00!
Take The Plane To The Train
Well, actually that should read, “Take the car to the plane to the train to the car to the hotel to the car to the train to the plane to the car!” Sheesh, what a trip! 😀 I have to say, traveling is the worst part for me.
I have to go through the entire airport in a wheel chair and, if you haven’t done this, I will tell you that sometimes it’s absolutely dehumanizing. I have been pushed facing the wall with the brakes on while the person pushing me handles small details. Yes, facing the wall like a piece of luggage. I have been moved “out of the way of others” in the TSA line and left on the side with other people in wheel chairs. I have missed a flight because the person pushing would not walk any faster. I have been pushed into the middle of a circle of people having a private conversation. No not everyone is like this, but enough people are that it’s become the worst part of the trip for me.
Well, I will review this hotel later but let me just say that you should not stay at the SpringHill Suites in Houston. It was a very disappointing stay. Also, don’t stay at the The Homewood Suites By Hilton. You can read that review here.
Every time we go we try to find a few new restaurants. We’ve found a nice Indian place, a great place for pho and now, a very cool Chinese vegetarian place. I’ve been planning on reviewing them all separately I just haven’t done it but, I think now is the time. Oh, and I discovered a delicious drink called coconut milk tea! OMG! It was so good! 🙂
My Experience At Excel
Well, first I must say that I was saddened to see that so many nice people who worked at Excel during my first 4 trips were no longer there. Some left Excel for other jobs, some left because of the flooding during the last big hurricane and so on. I was on a first name basis with most of them. The good news is that I met some new people and that’s always nice. Also, Susan Cork is still there and she is a sweetheart! Susan, thank you for caring so much! You too, Amber. 🙂
OK, confession time. They gave me a bell. 😀 When I told this to a friend on Facebook they said instantly, “WHO would give YOU a bell?” 😀 They were right. Here’s how it went. I said to Lisa, “Oh look, a bell.” and she replied, “DON’T”….but I did…RING. 😀 The girl came in and said, “Yes?” and I said (while Lisa rolled her eyes), “I get a bell?” and she replied innocently, “Yes, if you need anything just ring it.” I said, “Like this”..RING and she said, “Yes, but only if …” and another tech came in. He said, “Is everything OK?” and I said, “Yes, I was told I could ring this bell if I needed anything.” and he said “Yes, you ….”….RING” and the girl covered her mouth and started laughing and so did the other tech (Hong). 🙂 Then I said, “So, if I need anything just ring it?” and they said, “Yes” and I rang it again Ring…Ring…Ring 😀 She then shook her finger and threatened to take away my bell. 🙁 It became such a funny joke that every time the techs came in they would ring my bell. 😀 The techs are so nice at Excel. 🙂
In the past, I felt that there was a bit of confusion and a lack of communication regarding insurance issues but, it seems like most of those have been resolved. At least, this time around. Also, now that the FDA has approved PRRT, Excel seems to have become much busier. Overall, it was a much smoother experience as far as the paperwork goes. 🙂
Now that PRRT has been approved by the FDA, there are quite a few changes that surprised me that Excel has put into place. First, they no longer come with a Geiger counter to check your hotel room for radiation. Previously, before you could leave your hotel room, a tech from Excel would come with a Geiger counter and check everywhere including the toilet, the shower, the bed and sofa and on and on. They no longer do that. Also, most of the precautions advised by them are now based on the honor system. For example, bringing your own sheets and pillow cases and protecting the furniture in the hotel room with added coverings such as sheets. All of these things were done to avoid contaminating the room with radiation. It’s still a good idea even though they no longer check. 🙂 There are a few more changes as well so, if you’re going to Excel, I suggest reading the literature they supply. 🙂
Here is the schedule that Excel setup for me. Things changed and were moved around a bit but that always seems to happen.
8/6 @ 8:30 am – MRI of Abdomen with & without contrast
8/6 @ 9:15 am – MRI of Pelvis with & without contrast
8/6 @ 10:00 am – Renal Scan
8/6 @ 11:00 am – Pet/CT Gallium 68 (Net Spot Injection)
8/6 @ 12:00 am – Pet/CT Gallium 68 (Net Spot Scan)
8/7 @ 8:30 am – Pet/CT Injection
8/7 @ 9:45 am – Pet/CT Tumor Imaging Metabolic
8/7 @ 10:30 am – Bone Scan Injection
8/7 @ 12:30 pm – Bone Imaging
8/8 @ 10:00 am – Established Patient Consult
8/9 @ 9:15 am – Amino Acids
8/9 @ 9:30 am – Lutathera Therapy
8/9 @ 1:30 pm – Lutathera Therapy complete
*** Usually, somebody will give you a printed schedule for each day on your way out BUT, if they don’t just ask for it. 🙂 Also, they typically include directions such as fasting/no fasting and so on. Make sure that you ask about that on each day because there was a mix up with one of my scans and it had to be moved.
Why Do I Have To Be The Weird Patient
Part of every trip to Excel includes a patient consult. The doctors meet with you and discuss your scan results, tumor markers and plan your next treatment….and so on. Also, if you have not been there before they have a short movie about PRRT for you to watch. Because I had been to Excel before, and had PRRT before, we also discussed my scans compared to my last visit which was over 2 years ago. Which is where the weird part comes in.
Why, oh why, am I always the weird patient?! Why can’t I just be the typical patient. I mean… I know neuroendocrine cancer, aka net cancer, is a rare cancer but even so, my body feels the need to do the uncommon thing. Here’s the story.
Lisa and I are sitting in the room when the doctors enter. They sit down and start reviewing my blood tests with me. One of the doctors is saying that I have no progression because none of the tumor markers are showing any change and some have even decreased. So, he is sure that my scans will show no progression. In fact, he starts to wonder why I came. Usually, a patient waits until the tumors start growing again to come back for PRRT. I look at Lisa and I see that she is as confused as I am. The last time I was scanned at Duke, the oncologist said that my tumors came back with ferocity. There was so much growth that he was wondering if I had transitioned from medium grade to high grade. I wrote about that here. After my fourth treatment, my tumor mass had shrunk by about 33% and that was all gone and it happened very quickly.
After discussing a few more things the other doctor leaves and comes back with my scans. His first words were, “Progression. He has progression.” The first doctor just looks at me strangely (see, I’m weird) and then asks if he is sure. Yup, it has spread to a few more places. AND then I hear the words that I almost always hear when my body decides to be weird. Both doctors look at each other and say at the same time, “Interesting.” and start discussing it. Now, I know it’s not good that the cancer has spread but the two of us were chuckling about it. I have a habit of being “interesting” to doctors. 😀
Some Good News
After we discussed my scans and blood tests the doctor noticed that the size of my liver had shrunken by quite a bit. The spot where I had my tumor embolized had died back and the tissue had actually collapsed. You can read about my embolization here. I then realized that maybe the growth that my doctor at Duke was concerned about was this larger tumor. After consulting with Dr. Liu at Rocky Mountain Cancer Center in Colorado, I had that tumor embolized and maybe all of that growth was gone. Thank you, Dr. Liu!!! 😀 Either way, this good news definitely offset the bad news of new tumors!
My Next Trip
When I return for round 2, I will be spending much less time being scanned. Previously, it was the intense scanning on every trip but, now that PRRT is FDA approved the scanning has been reduced quite a bit for return trips. It’s one or two scans and you get PRRT very quickly after that. Now, that is a change that I can live with! I will be returning soon for trip #6 and I will post on that as well. 😀