Jay Lake (jaylake) wrote,
Jay Lake

[cancer] More details on yesterday's diagnosis and treatment plan

Per my post of yesterday afternoon [ jlake.com | LiveJournal ], I have received my terminal diagnosis. Here's the promised expanded narrative.

Tuesday Evening

I got the CT results around midday Tuesday. Unlike my usual practice, I made a decision not to reveal the radiology report publicly until after I had confirmed the news with my oncologist. This is because I wanted to be able to sit down with [info]the_child and discuss things with her first. She needs that from me right now.

Basically, they were terrifying. After trying hard to parse the report, at the time I made it a possible tumor in the liver, two possible tumors in the right lung, along with at least six confirmed liver tumors (full number not specified) and at least two confirmed omental tumors (full number not specified).

So, yeah, the outcome was what I had feared. We are entering the endgame. As I write this first part, Tuesday night, I have corresponded with my oncologist, but we have our consultation tomorrow midday. I don't know the formal prognosis yet. I don't see how this can be anything but my terminal event. I suspect given the widespread nature of the tumors, and their rapid growth (from No Evidence of Disease two months ago) that the original estimate of a year to live from terminal diagnosis will be optimistic.

We will know more tomorrow. Right now, I am terrified and grief-stricken, and those close around me feel much the same.

Wednesday Evening

Today, Lisa Costello, Dad and I went to see my oncologist to discuss yesterday's CT scan results. [info]mikigarrison also made it into town in time to join us.

My oncologist reviewed the scans with us. They were frankly frightening. One large mass in my peritoneum, two inches or more in size, along with another somewhat smaller mass. These are more omental tumors. Multiple masses of various sizes in my liver, some of them confirmed tumors, some of them suspected. Also two spots in my right lung which are suspected tumors.

We then discussed the questions I'd sent them in advance. My oncologist does not feel we would gain from a PET scan right now, as the results would not modify our treatment decisions. They also did not feel a brain scan was called for unless I began displaying symptoms of brain tumors such as headaches, nausea, or visual problems. Reduced creatinine and magnesium levels were not of especial concern, though they want me to continue on the magnesium supplements for the time being.

Regarding treatment, I will be taking Regorafenib, starting around the end of May. It is prescribed as a single agent, without any infusion backbone. We are going to keep the Celebrex in my regimen, but at a reduced dosage. Regorafenib is given in a four-week rotation as four daily pills for three weeks, with a week off following, as the drug is too hard on the body to take continuously. I will be going in to the infusion center every two weeks for bloodwork, mostly to monitor my liver functions.

Side effects include liver dysfunction, elevated blood pressure, pathological fatigue and something called hand/foot syndrome. That latter is signaled by overdevelopment of calluses, along with significant skin loss. My oncologist says this is very aggravating to many patients. I do not expect immune system compromise or significant cognitive deficits from Regorafenib. I will continue to enjoy erratic GI functioning.

Regarding my general activity level, it is "as tolerated". So long as I feel like getting up and doing things, I should do so. This includes writing, parenting and travel.

Treatment effectiveness will be evaluated by a CT scan 8 weeks after commencing treatment. If I do respond, we will maintain Regorafenib indefinitely, until my response fails. At that point, we may seek stage one clinical trials.

We do not expect Regorafenib to roll back any of the tumors. The hoped-for result is keeping the tumors in place, without further development, for six to twelve months. At that point, we'll be back to where we are now. This is because cancer is very adaptive. So even if Regorafenib is fully effective, my cancer will respond to the selection pressure of the drug until it becomes nonreactive, and can continue to grow at its own pace. That process typically takes six to twelve months.

If the Regorafenib is ineffective from the get-go (the chances of this are about 50/50), or were I for some reason to opt out of taking it, I can expect about three (more) months of relative health and reasonable quality of life, followed by six to nine months of decline followed by death. Otherwise, that's what I will experience when the Regorafenib ceases to be effective. We are not expecting any reversal of the tumors — I will be carrying these for the rest of my life. (Surgery is not an option due to both my liver fragility and the multi-focal, multi-site spread of tumors.)

In other words, I have nine to twenty-four months left to live, depending on how my cancer responds to the drug. Three of those months will be fairly good quality of life, plus whatever Regorafenib buys me, allowing for whatever side effects I experience. As noted, some of those can be severe.

When I do enter a terminal decline, that will be characterized by increased fatigue and listlessness, reduced activity, loss of appetite, loss of weight, and eventually jaundice and cognitive dysfunction. (I did ask about anti-depressants if required. She suggested Celexa as having minimal interactions with most other medications.)

My oncologist also said that at this point, they would consider me medically disabled. They felt that if I wanted to apply for disability at work, they could sustain that. We had some discussions about what disability means in this context, but from my oncologist's perspective, incurable Stage IV metastatic cancer qualifies. Dad and I will be meeting Saturday to discuss my options and action plan, and I will be reviewing all this with my employer soon.

Afterwards we met with the lead oncology social worker. We discussed insurance and disability issues and available group counseling resources. She also recommended I see a palliative care specialist associated with the oncology clinic who could assist with end of life planning, pain management, and so forth.

Thursday Morning

So here we are. I've discussed this with my family and friends. I've had a long talk with [info]the_child. There's a lot of decisions to be made yet, and a lot of things to be considered. At least I know where I stand.

Visual Aids

For reference, CEAs are now up to 9.2. This is unsurprising.

CEA levels 2012-05-08

And the tumor incidence chart, updated:

Incidence of Tumors 2013-06
(That last data point is estimated due to the vagaries of the radiology report.)

Since I posted yesterday afternoon, I have received an outpouring of hundreds of comments on Facebook and my two blogs, as well as emails and texts. Thank you everyone for your good wishes and your love. We know where this road is taking me. We just don't know how hard, or for how long. I will continue to tell this story in as much detail as I can manage, as the value of that narrative has been overwhelmingly demonstrated time and time again. Telling this story is one of the few good things I can derive from cancer. I cannot cheat death, but I can cheat the terror of the disease a little by easing it for others.

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Tags: cancer, child, family, friends, health, personal, work
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