Saturday, January 21, 2017

The latest - puzzling - news

For the second time, we've received CT scan results that initially seemed pretty discouraging, but that took on a different light when our oncologist examined them and consulted the senior radiologist in the clinical trial that I'm in to get his interpretation.

What the initial scan report said was puzzling. My main tumor has continued to shrink; the other existing tumors that in a previous scan had appeared to one radiologist to be growing -- but that our oncologist and the clinical trial radiologist had interpreted as liquefying (i.e., dying) -- are stable. All this is encouraging. But meanwhile, since my previous scan in November, the latest scan shows a brand-new area, 5 cm in diameter -- which makes it my biggest -- that has suddenly appeared. The initial report said there was a 75 % chance this was a tumor, and a 25 % chance that it is dead cells or fat cells. 

You can see why this is odd. The reason that the largest existing tumor is shrinking, and the other existing tumors are not growing, is presumably the chemotherapy I'm getting. But with that same chemotherapy, why would a new tumor suddenly and rapidly grow? One possibility is that the new "tumor" actually isn't a tumor at all, and our oncologist and the clinical trial radiologist see that as a significant possibility. The radiologist’s ultimate judgment was that the CT scan is "equivocal," so we really don't know yet whether this is a new tumor or not. 

That means the next step is to find out what this thing is. The best way to do that apparently is to do another of the MRI scans (with some sort of special augmentation compared to regular MRI's) that the clinical study uses. That will take place next week, and we’ll discuss the results with our oncologist as soon as they’re available. 

If it is a tumor, this is bad but, after talking with our oncologist about it this week, we're not discouraged. One reason is that this tumor's behavior (assuming it's a tumor) is so unlike the other tumors' response to the medication. That suggests that it may not be quite the same cancer as my other tumors -- and that would be quite plausible, because cancers mutate as a result of time and of their interaction with chemotherapy, of which I've now had a lot. That raises the possibility that this new growth may be the result of a mutation that there is an immunotherapy treatment for -- unlike my existing tumors, which were sadly lacking in attackable mutations. This wouldn’t be our next step, but it would be nice to have it available in reserve.

Even if that's not so, our oncologist reminded us that my cancer has seemed, right from the beginning, to be responsive to chemotherapy, and she made clear that she's still got a number of chemotherapy drugs left to employ. And there's also the possibility of treatment directed at destroying this particular tumor; apparently even though I'm basically stuck with an inoperable disease, a particular tumor (like this one) might still be attacked in other ways. Our oncologist mentioned something called ablation, which as I understand it uses heat made by radio waves to kill the tumor, and there are other targeted-attack treatments as well. 


So that's the news. As Teresa says, we've always known that this cancer was likely to zig and zag -- even though we'd have been willing to be an exception to that rule. Meanwhile, on a day-to-day basis what’s most occupying my attention is my digestion. I’ve written about the issues I’ve been having on this front over the past months (herehere and here), and unfortunately they’ve continued, if anything more intensely. 

Whether these have anything directly to do with the developments shown in the latest scan still isn’t clear – not surprisingly, since it isn’t clear what those developments are. Our oncologist thinks the digestive issues are the product of some sort of transient blockage, but that doesn’t explain what the cause of the blockages is. In any case, we haven’t yet figured out how to stop them, though I’m doing my best to hydrate and to follow my “bowel regimen.” 

The good news in this regard is that these events are so episodic. Most of the time I feel reasonably well, and I’ve been making progress on my research and writing. We also have medical clearance to travel, and I look forward to reporting on future trips!

Wednesday, January 18, 2017

Chemotherapy and its risks for those who administer it

A moment during chemotherapy two weeks ago: the nurse who was about to hook up the plastic bag containing my gemcitabine dose paused to first put on a medical gown. Teresa tells me she’s seen a couple of other nurses do this, but it doesn't seem to be common. Why did this nurse put on the gown? The answer, as she explained, is that it’s a precaution against contact with the gemcitabine. She herself had spilled gemcitabine on her arm at some point, and despite washing her arm quickly, she wound up with a burn on her skin – and that was from just a brief exposure to the drug.

She went on to explain to us that Memorial Sloan Kettering is engaged in a study of the effects of staff members' long-term exposure to chemotherapy drugs. That kind of exposure can be the result of spillage, but also can come from the vaporizing of tiny quantities of the drug during the process of intravenous infusion. In an earlier post I mentioned the new valve we saw not too long ago, used on the IV line in an effort to prevent this vaporizing. Between the valve and the gowns it seems that quite a bit of care is now being taken to protect the nurses, but it’s striking that these steps seem to be quite recent. Was this risk overlooked in the past? Or, on the other hand, is it being overstated now? In our experience, most nurses don’t seem to use the gowns; whether that reflects the power of habit, or the nurses’ lack of time, or instead attests to their sense that the gowns are an unnecessary precaution I don’t know.

The fact is that no one can know very much about this long-term risk, because chemotherapy itself hasn’t been around that long. In effect, the nurses are part of a life experiment to find out what the risks are.

Tuesday, January 17, 2017

Medical marijuana -- and what we aren't learning about it


Today’s New York Times has an editorial about the United States’ bizarre unwillingness to permit regular scientific research on medical marijuana. I’m no expert on this area of public policy, but I am getting interested in medical marijuana as a response to pain, and the Times reports that a National Academy of Sciences report from last week "found 'conclusive or substantial evidence' that marijuana or compounds in the plant can effectively treat chronic pain, nausea from chemotherapy and some symptoms of multiple sclerosis." 

So I want to second the Times’ editorial, based on what the pain management person we work with at Memorial Sloan Kettering -- a nurse practitioner -- told me yesterday. What she said is that there is no research on dosage levels for medical marijuana. But obviously different amounts of the drug will have different effects, both positive and negative. How are patients supposed to figure out the right dose? (That's assuming they can work their way through the bureaucratic obstacles state law may erect in the way of access to the drug -- in New Jersey's case, pretty substantial obstacles.) Apparently the answer is: without the aid of science. This is, to put the point gently, crazy.