8/23/16 - Shingles Update, CT Scan Results, Next Steps, Prognosis

Lot's to discuss, let's dive in!

Shingles: Shingles is not fun.  As I mentioned before, it affects a nerve directly.  For me the pain was at its worst last Tuesday, Wednesday, and Thursday, which was a constant 6, and randomly spiked to an 8 or 9 in my chest by my heart, which felt like a stabbing of a knife, and a twisting of the knife which were the spikes of pain.  That was the front.  

In the back, it felt like someone was jumping on my back, and it was a pain that you would try to shift to get away from, but couldn't.  Lastly, there was a pain by my armpit where someone was grabbing the muscle under my armpit and squeezing hard.  Someone I talked with who had shingles said the pain was worse than child labor.  If/when you're eligible, I strongly recommend getting the shingles vaccine (typically over the age of 60), and children should get the chickenpox vaccine. 

My doctor said that the Shingles was likely a side effect of the clinical trial, but we'll never know for sure.  Luckily, now it's just the rash pain that's left over, along with just a bit of the nerve pain.  Aside from my Liver/Colon surgery post medication wearing off, this is the worst physical pain I've gone through.  Don't get Shingles!

Last week, upon hearing about my shingles, I had to miss my CT scan scheduled for last Tuesday.  I contacted the nurse on Sunday to let her know of the current status to try to get my CT scan on Monday, yesterday.  Fortunately, I was cleared, and was able to have my CT Scan yesterday, and met with Dr. Harris just a few hours ago.  Here are the results.

CT Scan Results:  Not good.  The clinical trial didn't appear to do it's job of slowing down or shrinking the tumors, and over the last few months, the tumors in my liver, the most concerning area, grew approximately 20% since the last scan.  While this could have grown more and perhaps the trial did slow it down, Dr. Harris said that this was enough growth that we should probably move on to the next option.  He then presented 4 possible options:

1. Discontinue all treatment and focus on quality of life.
2. Regorafenib - presented before, this drug will negatively affect my quality of life for a possible benefit of up to 6 additional weeks.
3. Clinical Trial 1 - This is a quality of life trial, which is a drug that has been shown to help cancer patients maintain weight and generally feel good.  While this makes those who do not receive the placebo feel better, there has been no evidence that shows it extends life by attacking the tumors.
4. Clinical Trial 2 - Another phase 1 trial that has been tested on 24 humans, this is another immunotherapy drug that may help my immune system to prevent or stop the growth of tumors by blocking a receptor on my cells.  There are two groups, one that receive just the drug described above, and another group that receives an additional drug that affects the immune system by blocking the PD-L1 signaling pathway, which again will hopefully slow or stop the growth of tumors.

At this time, I'm leaning towards the 4th option, the second clinical trial just to be as aggressive as possible.  The 4th option just opened up a couple days ago, so we'll have to wait a few weeks, which works out timing wise, because we need time to pass since I've taken the last clinical trial to wash out of my body.

Prognosis:  When I asked this question in early May after the standard regimes stopped working, they said I have 6 months to live.  Given the information we have, the doctor said this is probably still accurate (November 2016).  I'm still not showing too many signs of the tumors affecting my health yet, today for the first time one of my liver function numbers was elevated, which is ultimately a good sign, which hopefully means I have more time.

It's a weird thing to think about and being told you have 6 months left to live.  It's like a countdown to an event or milestone that you just can't avoid.  I have lots of thoughts and lots of stuff in my mind when I was told that a few months ago, which I'll put in a separate post in the next couple days as this is getting long, but again I'm in a good spot overall with where we are and are in line with my expectations.  

Conclusion: I hope I wasn't too much of a downer, just wanted to be up front and present all the facts.  As I mentioned above, while I'm disappointed with what we heard today, I'm still optimistic about having options, and am hopeful that I can get on the trial that I want.  Please keep sending over the thoughts, prayers, vibes, juju, energy, hope, and any other cosmic positivity over, focusing especially on that I get on the trial and that it's super effective.  Thanks for reading!

- Jerome