[cancer] Yesterday’s visit to the oncologist

We saw my medical oncologist yesterday to discuss the CT scan results and review next steps.

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.

11 thoughts on “[cancer] Yesterday’s visit to the oncologist

  1. Ben Fenwick says:

    Awful news, Jay. I’m so sorry.

  2. pelican says:

    I’m sad to hear this Jay. Sending best wishes for love to you and yours.

  3. Ellen Eades says:

    As always, sadness and hugs.

    Mistletoe, huh? Well, if you’re going to use druid fluids, it’s only a short step to running naked through the woo-ids. I can see that.

  4. Shlomi says:

    <3 Hugs!

  5. Ovasi says:

    Thank you for your continued posts. I don’t know how to not sound trite when I call them heroic, but that’s the word that captures it best.
    I wish you luck with the trials.

  6. Stevie says:

    Jay, I recall that at least some of your tumours are PET positive; I appreciate that Pittsburgh is a very long way from Portland but if they remain PET positive then in your shoes I would give some thought to the MAD protocol. http://www.cancer.gov/clinicaltrials/search/view?cdrid=742309&version=HealthProfessional
    Obviously you could not be accepted in the trial whilst you are still on chemo but again, speaking from my own perspective, I would not feel an obligation to formally enrol in the trial; the science which underlies the trial is not in dispute, which is probably more than can be said for our understanding of the potential benefits of extracts of mistletoe…

  7. Ron says:

    I’ve been reading your blog posts for a couple of months, and one thing I cannot understand is why you choose to go through these treatments. You live in Oregon. You can petition for a right-to-die and get some pills to end your suffering. Your quality of life, based on your posts, is very poor. I just don’t understand it, Jay. You are being very aggressive about something you cannot change. You have two dozen tumors in your body and there is no drug on the market or in clinical trials that is going to cure you. And you mention your anger and frustration. Why? You choose to live with this. Your anger, your frustration, and your suffering all continue by your own volition.

    1. Jay says:

      You misunderstand my intentions, I believe. 😉

      I gave you a full response here:


      Thank you for making me think it through.

  8. Cora says:

    I’m so sorry, Jay. This sucks.

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