[cancer] You feel the devil’s riding crop

I saw my medical oncologist today. The visit was discouraging but not (yet) depressing.

Basically, they are baffled about the appearance of the fourth tumor. Their hope is that this is testing error on the PET scan. This is not unreasonable, as the MRI did not show a tumor at that site. However, it’s still a relatively low probability hope. The far likelier outcome is that this is a new metastatic tumor that has appeared while I was on chemo. As my medical oncologist said, it’s unclear what to do next.

Rather than go through more imaging hunting this down, we are going to wait for the surgery on 1/22 and simply have a look at the site with the classic human eyeball, Mark I — a surgical pathologist has been on my OR team before. I am attempting to move my next week’s appointment with my surgical oncologist up until this coming Wednesday, but that will depend considerably on what their nurse can do for me schedule-wise tomorrow. As for the procedure itself,we may be looking at a combination of resection and RF ablation, given the distributed geometry of my four (or three) tumors, and the existing surgical insults already inflicted on my liver.

If the tumor is not real, we will have had the surgery regardless, and will be evaluating chemo options. This may include redirecting the substrate from FOLFOX to FOLFIRI, or it may include simply cutting back the chemo. Even without tumor number four, the chemo cannot be considered especially effective at this point.

If the tumor is real, we have, as my medical oncologist and I have agreed, a very bad trend line. I have gone from single-focus tumors every year or so to multi-focus tumors, and now overlapping metastases — meaning no gap time between presentations. In that event, we’re aiming for sufficient resection to return me to No Evidence of Disease status — meaning, not that I’m cured, but that I am not currently presenting any tumors. My medical oncologist and I will probably discontinue most of my chemotherapy, as the new tumor would be clear evidence of its ineffectiveness, though likely I’d continue with the remainder of the Vectibix course. As they said, at this point we’re doing me a lot of damage for not much clinical benefit.

Going forward, we’ll be watching for the next metastasis. We’ll continue to treat with surgery and chemo as they present, until one presents in an inoperable location. At that point, we will switch to a care philosophy that balances life extension and quality of life, under a terminal diagnosis. My personal opinion is that my previous assessment of a 2-4 year timeline has been cut roughly in half. As always, there are wildcards and causes for hope, but the odds continue to get ever slimmer.

One of the wildcards I thought of has been shot down. I’d wondered about the value of going out of the country for a liver transplant. My medical oncologist tells me that the associated anti-rejection drugs will suppress my immune system to the point where I would be inviting very aggressive cancers from my existing tumor seeds, and I might actually wind up shortening my life even further.

Another wildcard is in the works. That is, the Illumina genetic testing to type my tumor. This is a long shot with some reasoning behind it. Basically, the concept is that not all cancers have the same genetic signature as implied by their presentation. In other words, a cancer which is phenotypically colon cancer might actually be liver cancer genetically. Since cancer drugs for the most part target genetic signatures, establishing that my cancer did not conform to colon cancer’s template would indicate a different course of treatment normally appropriate for the cancer that it is more closely genetically aligned with. As my cancer has been rather idiosyncratic in both its presentations and its response to treatment, this is not an unreasonable thing to check for. Watch for more news on this effort soon.

Next steps are my attempt to accelerate my meeting with my surgical oncologist, followed by the usual pre-operative screenings and procedures as I prepare for the surgery on 1/22. We probably won’t know much more until after the surgery and a direct evaluation of the suspected site of tumor number four.

So, not depressed yet, but nonetheless this atheist is waiting for the miracle to come.

24 thoughts on “[cancer] You feel the devil’s riding crop

  1. Laurie Mann says:

    I think still having the surgery and going for genetic testing are reasonable solutions at this point. Sorry things are continuing to be difficult.

  2. --E says:

    Atheists can hope for miracles; we just recognize them as the fortunate vagaries of the universe, not supernatural will. When crossed with human intellect in the form of medical science, sometimes it works out really well.

    This atheist joins you in hoping for that miracle.

  3. Erica WAgner says:

    I hate that you are going through this hell. Cancer is such a horribly unpredictable disease. I hope the genetic test reveals a new way to fight this bugger.

  4. You may have already addressed this in a previous post that I missed, but have you considered using (in addition to the treatment you’re already pursuing) THC oil? My father has what most oncologists call the “killer” pancreatic cancer. Most folks die from it within months. He has had to endure two chemos and there was some initial surgeries. But, he has survived 2 years past what he calls his “expiration date.” He believes the THC oil has much to do with it — and this is coming from a law enforcement guy of more than 25 years. He was going down hill and fast — every doctor’s visit at UofMichigan was worse and worse news. Then my sis and brother got him to try the THC oil. The results have been incredible. He’s still without a good chunk of his pancreas, stomach and intestines, & he has some daily meds to take. But his quality of life is very high. Save for some dietary restrictions (that he should have been on to begin with due to his Type II diabetes), he has a life that appears to be normal.

    But, I’ve been touting the “screw cancer” mantra for years now. Here’s hoping that whatever you decide, it gives you many more high-quality years.

    We’re cheering for you in Twin Peaks!

  5. HaraldS says:

    Well, miracle means you are simply on the edge of the statistical distribution. You can safely hope for it as an atheist.
    And we do, we do…

  6. Jennifer Hill says:

    I had wondered if you could get a liver transplant. Now I know why you shouldn’t get one. I’m crossing my fingers 1st for an incorrect PET scan and failing that, 2nd, for the discovery that genetically, you need a different course of treatment and that will work. Or both 1 and 2 would be nice.

  7. pelican says:

    So sorry to hear this, Jay.
    I’ll join the chorus of atheists hoping for miracles, and hoping the genotyping offers some new possibilities.

  8. One step at a time. You’re not out of steps yet. Keep moving forward. And fuck that cancer.

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