Friday, September 15, 2017

Good scan news

So last Wednesday I had another MRI and CT scan. On Friday, now a week ago, we went in to Sloan Kettering for an appointment with the oncologist and for treatment – knowing that if the scan results were bad then there might not be any treatment that day, and instead we might have to launch an intense search for a clinical trial to try to join.

But the results were good! All my tumors are either probably stable or they are a little smaller than they were. That means the current chemotherapy regime is working, and since it’s working it can continue unchanged. When our oncologist told us the news, our day was instantly transformed, from deeply stressful to quite routine. Off we went for that day’s chemotherapy (part of which is still making its way to my liver, one millimeter or so per day, via the internal pump I have).

By the time we got to Sloan Kettering, we’d already begun looking for available treatments, either standard ones that haven’t yet been used on me or clinical trials of experimental approaches. Teresa put together a spreadsheet of about 80 different possibilities. We’re not throwing that away, or stopping the research. But now we know we’re not in a crisis, so we can look more deliberately. And we also know that with every month that passes, new treatment possibilities emerge. So even if my next scan – about two months from now – is less positive than last week’s, we’ll have more knowledge and likely more options to work with in our search.


Meanwhile, the main current task is continued attention to my “bowel regime.” Sigh.  

Saturday, August 26, 2017

Mind over matter

I used to do a form of physical therapy that focused on mind-body connections. Quite often, the therapist would ask me to do something I had no idea how to do – say, to bend some part of my body in a direction I wasn’t aware it could bend at all. But I would try and she seemed to feel that my trying produced some results. So it appeared that it was possible to send a mental command out even without being sure that any part of my body could actually receive the command. One reason this made sense to me was that I had the impression that great athletes, and dancers, and yoga adepts really can do things with their bodies that seem simply inconceivable for others: there are circuits within us that lie dormant, or scarcely perceived, but that can be activated. And trying, mentally, to activate them is itself a part of the process of bringing them into action.

If all that is so, then perhaps the same principle can be applied to cancer. I have no idea how to issue mental commands to my immune system. As far as I can tell, this system operates on its own without any conscious input from me. And yet – what if there is a way to guide my immune system (or other parts of the body’s potential defenses against cancer)? I certainly wouldn’t give up on scientific medicine, but if I can give the drugs a boost, well, so much the better.

It seems, for example, that part of what is going on in cancer is that tumors have ingenious ways of avoiding notice by the body’s immune defenses. If immune cells can’t recognize tumors as hostile intruders, they won’t attack. Some current immunotherapy drugs, the “checkpoint inhibitors,” address this difficulty; as I understand it, the specific problem they address is that tumors fool immune cells’ “checkpoints,” and the way they address this problem is to inhibit – turn off – those checkpoints. So presumably the same result could be achieved if I could somehow order my immune system to turn off those checkpoints.

Could I possibly do this? I really don’t know. I do know that cancer affects people in very mysterious ways. Some people go into remission without using any of the apparatus of modern scientific medicine. What have these people done to achieve this? Again, I don’t know. But I think it stands to reason that if people have any power to control how their immune systems function, they need to try to exercise that power in order to activate it. I haven’t done by any means as much of this as I’ve meant to, but lately I’ve been thinking more about how to go about it.

How one should exercise this power, even if it exists, is mysterious. Maybe the right approach is to seek a zen tranquility, in which the body moves of its own accord towards a natural harmony. A visualization CD that I have encourages you to visualize friendly magical beings around a powerful, healing light (though it has some tougher images of immune cells at work as well). Or perhaps, particularly with respect to checkpoint inhibitors, one should visualize the immune cells achieving a form of grace, in which each one “was blind but now I see,” and I’ve tried to visualize exactly this.

But I also incline to another strategy. Good health may feel like natural harmony or salvation, but the microscopic world of the immune system doesn’t seem very zen. It might be more accurate to describe the immune system as a regime of constant slaughter, in which your body’s cells set out to destroy the agents of illness that they encounter. Here’s a description of the functioning of “killer T cells,” from a google search: “When the perfectly shaped virus antigen on an infected cell fits into the Killer T-cell receptor, the T-cell releases perforin and cytotoxins. Perforin first makes a pore, or hole, in [the] membrane of the infected cell. Cytotoxins go directly inside the cell through this pore, destroying it and any viruses inside.” This is the world of violence, and that violence against the tumors is exactly what I want to incite. So perhaps the right image to visualize is of immune cells like soldiers, equipped with night goggles to make sure the cancer cells cannot hide under cover of darkness, and ready to attack with all their might – and I’ve tried this too.

Perhaps, however, images that try to echo real elements of the immune system are too literalistic. Maybe a better possibility is more metaphorical: if I want the tumors gone, what I want is for them to be erased from my body. Teresa imagines, and I’ve tried to as well, an eraser vigorously attacking each of the tumors. This image of erasure strikes me as vivid and physical and also a bit funny, and all of that may be ideal.

Or maybe one should simply send out a direction to the immune system, telling it to attack the tumors. This may be a call which there are no circuits to carry and no recipients to answer. Or it may be the kind of call that begins the difficult process of learning to do something you never had to do before. In any event, the only way to find out is to try.  


My current chemo -- an update

I’ve now had two rounds of the new regime – an infusion of mitomycin over a 45-minute period, and a two-week infusion of FUDR, both injected through my pump. Now I’m in the two-week off period that follows each round of treatment, and soon I will have a scan that will say whether the new treatment is working.

Meanwhile, I’ve learned more about the treatment itself. First, I’m pretty sure now that I was wrong to write after the first set of infusions that a single needle seemed to have been used for two separate insertions, one for each of the two drugs being injected into the pump. In hindsight, that doesn’t really seem conceivable, and my impression from the second set of infusions was that in fact a new needle was used for each of the two drugs. I guess the sheer size of those needles distracts me. (They need to be long, by the way, because they’re not primarily going into me – instead they’re going through a little bit of me on the way to their target in the pump. But even the nurse for one of the rounds agreed that they are big needles.)

Second, yesterday for the first time I grasped how much of the FUDR is actually going to my liver in the two-week infusion process. The answer for the past two weeks was: 18 cubic centimeters. I know this because the nurse drained 12 cc’s  of the drug from the pump, and she explained that they expect to drain between 10 and 15 cc’s – out of a total of 30 cc’s that they put in at the start of the process. (Once the medicine is drained at the end of the two-week treatment period, by the way, the pump is then loaded for the two-week off period with an inert substance, a mixture of saline solution and heparin, an anti-clotting agent.) So that means that over the two weeks of the infusion, just a shade over 1 cc of FUDR was making its way to my liver each day. That must say something about how powerful a drug FUDR is. I hope that power is making itself felt against the tumors. It’s also probably having some impact on my healthy liver cells, but fortunately the blood test results show that my liver is doing well despite these medical affronts.  

Third, after the latest infusion I had two or three days of abdominal discomfort. It appears that this may have been, essentially, acid reflux, and fortunately the treatment Memorial Sloan Kettering prescribed – increasing my anti-acid reflux medications, including the old standby, Pepto-Bismol – seemed to address my symptoms. But what was most surprising about this was the comment of the MSK nurse, who told me that any use of the pump, even with inert substances, can cause difficulties like this. This I suppose is further proof that you can’t fool Mother Nature – if you put a foreign object inside your abdomen and inject things through it to your liver, your body may acquiesce but it won’t necessarily be pleased.


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Still, if the scan results are good, I’ll be happy to continue treating acid reflux!