One thing I learned which was not previously known to me is that I now also have a tumor in my spleen. This joins the roughly two dozen tumors in my lungs, liver and peritoneum. This isn't considered a new tumor as a retroactive review of my September scan shows a faint shadow on my spleen which developed into an identifiable tumor on this scan.
My oncologist's opinion is that the Regorafenib is losing its effectiveness, and therefore we should be actively looking for a clinical trial to engage. We are not yet abandoning the medication until we know I am lined up for a clinical trial. They characterized the usage of the drug going forward as a 'bridge' to the next treatment step.
They have a query into the trials office at my treating hospital to see where I am in line for their current clinical trials. There is apparently at least one Phase One clinical trial there for which I am a candidate. Once we hear from them, I will make an appointment with the oncologist who coordinates the trials.
We will also be looking at Phase One and Phase Two trials across the country, through the good offices of my team of science advisors. My oncologist was a bit dubious of this, with respect to the resources expended to participate in a
distant trial, but we mentioned that the trials coordinator had previously been supportive of the idea of me enrolling in a distant trial if I were a strong candidate, and the hospital being willing to consider supporting that effort as needed.
We brought up two specific trials which had come to our attention recently, a mistletoe extract trial at Johns Hopkins, and a PI3K/AKT inhibitor-Regorafenib trial at Virginia Commonwealth University. My doctor was very skeptical of the mistletoe trial, specifically because of the lack of understanding of the molecular basis of the treatment. They felt the PI3K/AKT inhibitor trial would be of little value to me because I do not have the relevant PI3K/AKT mutation.
I also asked about my life expectancy. My oncologist reluctantly confirmed six to nine months, barring a trial providing additional relief as the Regorafenib has over the past six months.
Next steps are:
- A followup with my medical oncologist on 12/11.
- An appointment with the trials coordinator once we know where I am on the waiting list for trials at my treating hospital.
- An appointment with my palliative care doctor on 12/30 to follow up on the sleep medication questions (which we will be pursuing in the mean time by email with them) and next steps in palliative care.
- Our best efforts to locate additional trials for which I am a strong candidate and determine if I can receive treatment.
I am angry, scared and frustrated. This is the world I live in, though not for too much longer, it seems.