5/3/16: CT Scan Results, Next Steps, and Prognosis

Hope you're all well!  As mentioned in my last update, I had a CT scan this morning and met with my Oncologist to discuss the results.  Lot's to get to here, so let's talk about the good news and the bad news.  

This staging scan was to see the progression of my tumors to better understand how effective the Y90 radiation and oral chemo have been.  My CEA (blood tumor count) has slowly been rising, and the CT scan showed how this translates to tumor growth.

The Good News: The good news is that the tumors in my lungs are still small.  Even though they grew 50%, they are at largest 10mm.  The growth of the two largest increased in size from 7 to 10mm, and from 5 to 7mm.  I still have over 50 tumors on my lungs, but they are all small and don't present any side effects at the moment.

The Bad News: You know the bad news is bad when I say the good news is that the lung tumors grew 50%.  Here we go...

The bad news is that on the liver, there are now growths in the segments that were previously treated by Y90 a couple months ago.  About 75% of the tumors shrunk 50%, but other spots have grown 50%, which indicates resistance to both the radiation and the chemo.  According to the oncologist, the chemo I'm on has run its course and the liver presents the highest priority at this point.  

Next Steps: Tomorrow the oncologist will meet with the liver surgeon, interventional radiology, and other doctors to discuss cases.  He'll ask the interventional radiologists about another targeted therapy using Y90 radiation again on the spots that have grown.  While this is a targeted therapy, we need something systematic that attacks the cancer cells across the body and presented the following three options:

1. Standard Care: This is another oral chemo drug that may work, but presents a high likelihood of higher impact of side effects.  This would be a long course (5-6 months) that would impact my quality of life for a return of, on average, an extension of life by 1.5 months.  Not my first choice at this point given the impact on the quality of life.
   
   
2. Clinical Trial A: This is a clinical trial I am eligible for and has a primary purpose of reducing the side effects felt by the chemo drugs and is meant to increase the quality of life for individuals.  The secondary purpose is that the drug may also stabilize the cancer growth for those that receive the drug, and they're finding 5-10% of individuals have a positive response.  
   
   The kicker here is that here is a 2/3 chance I would receive this drug, and that I only have, on average, a 5-10% chance of the tumors responding.  Given that I don't have much side effects of the chemo I've been on, the 33% chance of receiving a placebo, and the low likelihood of response, this is also not my first choice at this point.
   
   
3. Clinical Trial B:  This is a phase 1 clinical trial that is in the very, very early stages of testing.  So early that it doesn't even have a name yet.  This is so new that we are still waiting for spots to open up to try this drug.  We don't know the side effects, we don't know the effectiveness rate, and we don't know when I can get on this drug.
   
   The human body has 10,000 genes, and this drug works by altering 2,000 of those genes.  While the effectiveness of this trial hasn't been proven, I think given that I haven't had many side effects from the other drugs that it's worth the risk.  For this particular drug, it's a high risk for a potentially high reward.  
   
   This drug also requires that I haven't been on any other chemo for 3-4 weeks, so starting one of the other drugs would invalidate me from participating in this trial.  The doctor said that he put my name down for this trial, and expects that hopefully we can get on the trial in the next 3-6 weeks.  
   
   Given that I'm not feeling many side effects from the chemo I've taken so far, and that I'm in generally good health, my oncologist, Sam, and I have decided this is the path I should take.  Hopefully I can get on the trial shortly, but there are 3 other names from SCCA who are ahead of me on this list, but may be on other drugs so they aren't able to participate in the study once a spot opens up.

Prognosis: I asked the difficult prognosis question regarding how much time I have left and did not get a favorable response.  The doctor took an interesting scientific approach to the question.  He said, for those individuals who are eligible for the first clinical trial we talked about (like myself), individuals who did not show a response survived an average of 5 months.  If individuals did show a response, they survived about 6.5 months after beginning the trial.  

We are running out of options that have been proven to work, so I'm crossing my fingers that A) I can get on the phase I clinical trial, and B) I get an amazing response from the drug with minimal side effects.  He reassured me this was the best choice given that I have not shown nearly as much muscle loss and general health impacts as others who have had as much and as many different chemo and treatments as I've had, and I agree.  

At this point, we play the waiting game and hope to hear about the trial soon.  While it was disappointing to hear this news today, I am in decent spirits knowing that I am doing everything I can.  I've always focused on what I can control, and knowing that I'm doing everything I can gives me peace.  As before, you won't see me change my perspective, and I will always remain positive.  

Thanks for your continued thoughts, prayers, and well wishes.  As I hear more, I'll post.  I hope to see you all soon and wish you a great May!

- Jerome