Daily Archives: March 10, 2016

Just doing it

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I had my six week scan review yesterday—twenty months of stability and counting. At these appointments Dr. Shaw always gives my lungs a listen and this time she kept her stethoscope pressed to my back a little longer than usual and I wondered what it was that she heard. Nothing, as it turns out. I’ve had a little wheeze in the bottom of my upper left lobe all along, but for the first time, she couldn’t find it. ‘Maybe I’m cured’ I said. ‘Maybe you are’ she replied. Or maybe that’s just what I imagined.

What she did say was that she was relieved as she’d been feeling a little anxiety as to what might transpire after my being off drug for a week. Me too. It might be coincidence but my progression on crizotinib followed a break from therapy when I had surgery on a shattered left ankle. And resistance to zykadia came in the wake of my second bout of liver toxicity and subsequent pause in drug.

My labs three weeks ago indicated elevated amylase. My liver enzymes have been only mildly elevated on PF-06463922 so I have continued to enjoy a glass of wine most evenings. Now alcohol was no longer an option.

And why the break in drug? Two weeks ago I began to feel really crummy. A virus, probably strep throat, and then several days later a sinus infection as well. I was also really constipated, an unfortunate side effect of treatment. But then I started to get really uncomfortable with a burning pain in my abdomen and super nauseous–combined with my elevated amylase these symptoms were highly suggestive of pancreatitis. I was in touch with Dr. Shaw, who had prescribed an antibiotic for the ear infection. She felt it would be wise to test my amylase again and as I had an appointment with my ear nose throat doctor on Wednesday we agreed to do it then. In the meantime I would fast and drink only clear liquids so as to give my pancreas a rest. By late Tuesday I was feeling so very bad that I texted Alice and asked her if I should consider going to the emergency room.

Alice called me back and when I told her I felt this represented pancreatitis her response was ‘Linnea, I really hope you don’t have pancreatitis because if you do, it would be grounds for exclusion from almost all further clinical trials.’ This was news to me. Just the day before I had spoken to a friend who’d been excluded from a trial for pancreatitis but I was under the impression that hers was a singular experience pertinent only to that particular trial.

So I told Alice I was not going to get my amylase tested again–that I hadn’t come this far only to learn that I had no more treatment options because of an elevated lab result. She said we’d see how I felt the next day. The following morning I received a text from her  asking me how I felt. My guarded and completely disingenuous response was ‘Hi. Better.’ She then gently but firmly urged me to come in for labs. And I responded with this message:

Alice, I guess I haven’t been paying attention but until I spoke to Margaret I did not know it was grounds for exclusion and it was only after speaking to you that I understood that exclusion meant virtually all trials. I have a very strong commitment to surviving and treatment options are part of my hope for the future. Under any other circumstances I would get that lab work done but as it stands, it is absolutely not in my best interest in the long run. I’m sorry. I would like you to advise me as to how long I can safely hold food for though. Thanks.’

Alice Shaw is a fabulous doctor and I consider her a friend as well. I admire her in so many ways and one of them is how she can just roll with the punches. She heard what I had to say and yet stood her ground. She advised me that if I were feeling better and merely had an elevated lab result it would not be considered pancreatitis. I needed greater reassurance–‘Would that protect my future options?’ She repeated what she had already said, that a lab test alone should have no impact.

So I assented. I got the lab work done and it came back completely normal. Only then did I acknowledge that I still felt absolutely awful. A quick reassessment of symptoms and Alice surmised that this was likely gastritis and possibly a peptic ulcer, which I could address with laxatives and anti-reflux medication.

We also talked a little bit more about what could have happened if I’d actually had pancreatitis. I told her that I felt these sorts of exclusions were patently unfair, and she said that the rationale behind the exclusions was that certain individuals were more likely to experience serious side effects.

I don’t buy it. When I entered my first clinical trial in 2008, I was taking on enormous risk–the only other person in the trial had died almost immediately, in large part because of the toxicity of the experimental therapy. Knowing this did not in any way deter me because I understood that if I chose not to enroll in the trial (my only hope and a thin sliver at that), I would be dead within a couple of months anyway. It was a no brainer.

My explanation to Alice was this: If I experienced life threatening side effects I might be fucked but at least I’d be fucked with options. But that having no treatment options meant that I was totally fucked as I would experience the most devastating adverse event of them all—I would be dead. And that it is my viewpoint that patient safety might be a secondary concern to getting drugs to market faster and without hitches (like adverse events).

I trust Alice implicitly and know that she is highly invested in my personal outcome. However, I hold no illusions about what it means to move from patient to participant in a clinical trial–the loss of autonomy can be really, really frustrating.

In the end, nobody loves this life of mine as much as I do and self advocacy is key to survival. Woody Allen once said that 80% of success is showing up and when it comes to tomorrow, I will not be a no show.