Scans and “Scanxiety”

Metastatic cancer patients, regardless of the type of cancer they have, quickly become used to the routine of “scan, treat, repeat.” On some interval, usually 3 months, you have CT, bone, and/ or PET scans that show whether a drug regimen is working. If it is (or if the results are stable), you continue until the cancer starts growing again. If not—you move on to something else, for as long as something else acceptable is available and tolerable. The time around these scans is usually quite nerve-wracking—hence the made up word known as “scanxiety.”

Last week I had a brain scan and a CT scan. The brain scan showed that the radiation worked on the areas treated, and the tiny seeds in the brain itself, not in a place at the moment to cause symptoms, grew slightly. The CT scan, however, showed definitively that the drug I am currently on is not working—the spots on my liver, in particular, got larger. So I am off that drug, an oral chemotherapy, and am waiting to hear what is next—one of two clinical trials, or possibly another chemotherapy. (One of the trials involves immunotherapy, which has been successful in other forms of cancer –especially melanoma–and is now the subject of a number of trials in breast cancer as well. )

I have now had a total of eight series of scans since my diagnosis of metastatic breast cancer, and all but two have involved bad news. I have not been one of those people who hear that their cancer has shrunk dramatically, or has become invisible on the scan (No evidence of disease—doesn’t mean there is no cancer, but that it can’t be picked up on a scan).  Rather, each new drug regimen usually fails, increasingly by the first set of scans.

On some level, I realized the other day that while I’m not particularly fatalistic, I have now come to almost expect this.    The news, however disappointing it is to hear at the time, doesn’t hit me quite as hard as it did earlier in the process. The only positive in my case is that the cancer, though obviously very wily (since I go to Mass General, I joke that my cancer is so smart it got into Harvard…..) is also not particularly fast growing—for example, my liver lesions grew by only about a centimeter over more than a three month period, and the lymph nodes by much less than that. I also had a harder time on this particular drug than on previous combinations, so in a way I’m not sorry to move on.

Still, it is increasingly hard to approach the “next thing” with the same optimism I felt a year ago. Fortunately, I still feel relatively well and have options left—that’s one of the advantages of being at a state of the art center such as Mass General–but obviously, the opening is narrowing. The conventional wisdom is that as the cancer continues to morph, each treatment generally has a lower percentage chance of working than those that come before. This does not mean that the next thing can’t work, but the fact that I have cycled through so many treatments in such a short period of time is objectively not a good sign.

My main goal at the moment is to stay in balance—to neither fall into despair, nor have unrealistic hope. Probably the most difficult thing to deal with is the fact that no matter what I do, I am ultimately not in control what happens with the cancer. I am only in control of how I choose to respond to it. In a future post, I want to write about the influence of living in Asia on my reactions, as I’ve increasingly realized the degree to which I have absorbed, albeit unconsciously, a certain acceptance of the great uncertainty of life.  And so, I move on to the next thing.

The Humans

Last night, my husband and sister-in-law and I saw the Broadway play, “The Humans.”  It is set around a Thanksgiving dinner and tells the story of an average family dealing with an aging parent and dementia, a broken relationship, chronic illness, weight issues, job loss, money troubles, and a painful, life altering secret.  It also has moments of grace–the obvious love of the family members for each other, a near miss in getting caught in the 9/11 tragedy, and the fact that to a person, the characters have retained a sense of humor despite life’s troubles.

The theatre was packed and we even had a celebrity siting–the actress Nicole Kidman came in a few minutes after we did and was seated several rows ahead of us.  As I looked around, it occurred to me that the very fact that we could afford to enjoy this play puts us in a very privileged position.  A night’s entertainment on Broadway these days for three people is  easily the cost of a car payment, a new dishwasher, or a medical co-pay for a family not unlike those profiled in the play.  The same is true, these days, of a night out at a Major League baseball game–once a simple and affordable pleasure for even a working class family, it is no longer accessible to many.

This struck me in part because a couple of weeks ago, I got together with an old friend I hadn’t seen for many years, and she reminded me that when we both worked for state government back in Michigan 30 years ago, we once flew to New York for a weekend Broadway blitz–we saw four or five plays, both on and off Broadway.  Such an undertaking now would give pause at a minimum, and probably be unaffordable for the average state worker.

The play itself contains a brief discussion, almost in passing, of the divide between the wealthy and the poor, and the degree to which greed has become a disease.  This is not a political post, but despite my thorough enjoyment of the play,  it also served as one more piece of evidence of how far we have strayed as a society.

 

Clinical Trials

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Since I was diagnosed with metastatic breast cancer a year and a half ago, I have been on four clinical trials. In fact, the only treatment I’ve had that hasn’t been trial based is the one I’m on now, an oral chemotherapy called Xeloda.  Although I’ve had mixed success personally with trials, I’m a big fan of them and encourage anyone with a challenging disease like cancer, heart disease, Parkinson’s, Alzheimer’s, or others, to check out what’s available on https://clinicaltrials.gov and to ask your doctor.

What is a clinical trial?  Clinical trials study both drugs and other modalities to determine safety and efficacy in humans, and whether or not a particular treatment is superior to what may already be on the market and approved by the relevant government agency (in the case of the U.S., that’s the FDA).   Trials may be for healthy people or for those with a particular disease. For metastatic breast cancer, for example, there are currently more than 700 trials around the world studying various therapies. Some of these are particular to breast cancer, but increasingly, trials are open to more than one kind of cancer, sometimes termed “basket studies.” This is because a particular mutation may occur in more than one type of cancer, and a targeted therapy could address it.

Trials come, generally, in three phases (a fourth phase is sometimes added after a therapy is commercially available).  Phase I is the most experimental as a drug, for example, has not yet been studied in humans. Phase I trials involve a fairly small number of people; different participants will be given different dosages to measure safety, side effects, and efficacy, as well as how a drug is absorbed in the system.   Gradually, this process is refined, and a more mature Phase I trial—I’ve been on two of these—has more participants, although the administration may still vary according to which “arm” of the trial you are in.   Phase II is an expansion of Phase I, where even more participants are enrolled. Finally, Phase III compares the study protocol or drug to an established alternative. In Phase III, you are randomized either to the standard protocol or the new alternative.

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My first trial was a Phase III trial at Dartmouth, and I was randomized to the study drug, a marine based chemotherapy developed in Japan, called eribulin. This lasted about 5 months before the cancer began growing again, and I was removed from the trial.  My second trial was a genomic test, administered out of Ohio State’s James Cancer Center, that identified mutations in my cancer that might be receptive to therapies. (The advantage of this trial was that the test was free, whereas having it done commercially would have been several thousand dollars, probably not reimbursed at that time by insurance.) My third and fourth trials were at Mass General, and both involved a combination of new, not yet on the market targeted drugs, and others that had shown efficacy.   Unfortunately, none of these worked for long in my case (my doctor said they have all “underperformed” relative to expectations), but I have some comfort in knowing that my participation is advancing understanding of new therapies for other patients.

There are advantages and disadvantages to trials.   The main advantage is that you are often (with the exception of Phase III trials when you are randomized to a standard therapy), getting the latest available scientific thinking—you have access to therapies that otherwise are not yet available. A second advantage is that you get very personalized treatment—trial nurses are assigned to each participant, and I have found them, without exception, fantastic to deal with and very proactive.

There are disadvantages, however.  One is time. Often, especially in the earlier phases, you will be subjected to numerous blood draws and tests to determine how the drug is being absorbed (the record for me was 16 vials), sometimes with fasting and sometimes not. As you progress in the trial, these interventions become less frequent, but the schedule of treatment is often quite strict—on the Japanese-sponsored trial I was on, I had to cancel a planned international trip because it fell during a week I was scheduled for treatment, and the only exception allowed was if I had had a medical reason (e.g. low white blood cell counts).   Secondly, trials can be quite strict on who they admit. This includes thresholds on certain blood levels, such as liver enzymes, white cell counts, and even mineral levels such as calcium, phosphorus, and potassium, as well as previous therapies (there is often a limit, for example, on the number of previous chemotherapies that you can have to be a participant in certain trials).   In my case, now that I have brain metastases, a number of trials for which I would otherwise be eligible are off limits as many therapies do not cross the blood-brain barrier.   Guidelines for continuing are also strict–the last trial I was on worked on some of my cancer, but I had a new lesion in my liver, so had to be removed from the trial as any new lesion is generally disqualifying.    Finally, I’ve found that as a patient, you have to do a fair amount of your own research, as institutions generally are aware of and promote only their own trials.   Research is how I found the genomic testing at the James Cancer Center, for example.

I am lucky in that I am near some world premier institutions, all NCI designated cancer centers, including Dartmouth and Mass General, where I’ve had treatment, as well as Dana Farber (and Memorial Sloan Kettering is not that far).   These research hospitals tend to be where the bulk of trials take place, but smaller centers get in on the action as well, especially for Phase III trials.   Having said this, many trials fail to enroll enough participants, and part of the reason for this is knowledge and access—I think some may fear they are being used as human lab rats– but also the complexity of participation. Despite the fact that I’ve already been on trials and the future options may be more limited, I remain committed to participation both for its potential benefits for me personally, and to advance the cause of better treatment for others.