Thinking about this coming Monday takes my breath away. It is on that
day that my life could change. Spoiler alert – I don’t want my life to change.
To get you all up to speed….
As you know, I had a tumor that was discovered in the scar
tissue in my tush. The problem was that in order to radiate it effectively,
they needed to see it on scan. So a few weeks ago, I took both a PET/CT scan
and an MRI with radiation. Fortunately, they were able to locate the tumor and
I commenced a 10 round radiation program on July 14. The radiation oncologist
was wonderful working with my schedule. He even planned for 2 rounds of
radiation on the 17th so that I could fly down to San Diego that
evening. I had to present to my board the following morning and I was holding a
fundraiser for the Assembly speaker that afternoon. Amazingly, everything went
off without a hitch. I can’t tell you how incredible it was that he was able to
work with me – although he did think I was a little nuts.
Unfortunately, the PET/CT scan showed a lot more activity
than my previous PET/CT. This is very
concerning for everyone since it could indicate significant cancer growth. So –
on Monday, I will be given a regular CT to see if there is growth or if what
was lighting up the CT was only inflammation. If my CT shows growth, I will be
kicked off of my wonderful Genentech trial with PDL-1. My options at that point
are not encouraging. They basically consist of 3 potential paths forward:
- Go on a trial called CTLA4 – this would inject another immunotherapy directly into a tumor and then we’d blast it with radiation with the hope that it would ignite my immune system to go after the cancer throughout my body (very similar conceptually to what we’ve been doing). Unfortunately, there aren’t great stats that show that this will work on colon cancer.
- Go on another trial with a name I can’t remember – there is a small company with a single product that they are considering for me. Unfortunately, the trial is in Phase 1, so there are hardly any results. Also – this trial would entail me going down to Stanford twice a week for 6 weeks for a 4-6 hour infusion. Pretty awful sounding with no encouraging stats to make me excited about putting myself through it.
- Go back on chemo
So – as you can see, I am really really praying that the CT
scan shows stable disease and that I won’t be contemplating any of the 3
options above. If it doesn’t show stable disease, I will most likely try to
find out if there are other options with other cancer centers.
I am also continuing to be in a lot of pain from the
radiation. They said that the pain should begin to dissipate after a few weeks.
It can’t come soon enough. I’m having trouble sleeping because of the pain and
that makes dealing with all of this uncertainty even more difficult.
Now you are all up to speed on the latest. I hate to ask it again, but I need your
prayers over the next several days. I’m scared right now. I’m tired right now.
I need your strength. I need your love.
I need your faith and hope.
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