Tag Archives: PF-06463922

A Bear behind

I’ve been gone for awhile now and I feel a stranger in my own blog. I apologize for such an extended silence—I know that in this community the lack of an update is worrying. So let me start by saying I’m okay: not exactly jump up and down great, but hanging in there.

By way of explanation; I am happy, happy, happy. Mentally, I have never been better. However, physically the situation is a little more complicated as it would appear I’m not responding to treatment. Although I’ve not had a CT scan since starting back on Xalkori, my cough, nocturnal bronchorrhea production and a troubling shortness of breath suggest that my cancer is spreading. In a few weeks, I shall likely start my third clinical trial for an inhibitor that targets both ALK and ROS-1 mutations:  PF-06463922.

I am mindful that it is a blessing to continue to have options. I am also entirely cognizant of the fact that if I don’t respond to the trial drug, those options will be rather limited. It is a sobering realization and yet I continue to focus primarily on the positive aspects of my ongoing survival.

For instance, yesterday was not only Easter, it was Peter’s seventeenth birthday. I was diagnosed with lung cancer in 2005 just before Peter turned eight; two weeks ago I quietly marked nine years of surviving post-diagnosis. Happy Birthday Peter and I am thrilled to be able to celebrate with you!

Life really is remarkable—in all its ups and downs. My own has been topsy turvy for some months now and at some point I felt the need to pull back from blogging and simply concentrate on the day to day business of restructuring existence; more on that later.

First, a little personal history: it was just over fifteen months ago when I resumed chemotherapy. Simultaneously, my marriage was hitting the skids. I felt sick, scared, lonely, trapped and was well on my way to becoming someone I find intolerable—an unhappy person.

Without a doubt, I had hit my personal low point and for the first time, I considered stopping all treatment and simply saying enough. Briefly, that. Instead I took a step back and assessed the situation. It wasn’t going to be easy, but I began to formulate a plan to not only survive, but to prevail.

pre·vail
priˈvāl
verb
1.
prove more powerful than opposing forces; be victorious.
“it is hard for logic to prevail over emotion”

My first priority was Peter’s immediate future, and to that end much hard work went into the private school process. As you know, he was accepted to Phillips Exeter Academy where I am happy to report he is thriving. I am particularly proud of the fact that he qualified for the novice crew team this spring—it turns out rowing is something that Peter really enjoys and has the potential to be quite good at.

My second goal was rather short term, and that was to get through chemo. I did, and after six months of infusions, enjoyed almost nine treatment-free months. Even though my cancer progressed, my body got stronger, and I really needed that physical strength when it came time to move.

And what a move it was. Deciding to separate and ultimately get divorced after more than twenty one years of marriage was huge; particularly under the circumstances. Obviously, it is not a decision that was made lightly.

My dear friend Melinda has remained my guardian angel throughout this process, offering counsel as well as emotional and financial support at various junctures. We’ve been pals (and partners in crime) for almost five decades now and I simply can’t imagine life without her.

I’ve also had some help from a surprising source. At that low, low point many months ago, lying in bed one night after chemo, I felt the need to be both protected and held. I searched my imagination for the appropriate companion and found that it was a bear that I was looking for. I could not only see this bear, I could feel its presence beside me. And I asked this large animal to hold me close; to keep me safe. In exchange for this protection, I told the bear that when I died, it could eat me.

Now this may sound really bizarre—a little crazy even. But, to me it was a perfectly fair exchange. I truly believe that we are all part of one living system, and that when we take our final breath, our energy is dispersed. To be eaten by another creature is a logical repurposing of energy—we do it ourselves every time we dine on something that was once living (plant or animal). I realize some of you may be horrified—and once again I offer my apology. However, know that for me the current tradition of embalming a body is anathema–and cremation is not much better. If I cannot be eaten, I would rather decay and become part of the soil.

Some weeks ago, there was a social quiz on Facebook–‘What is your spirit animal?‘ I took the silly thing out of curiosity. It was already obvious to me what my spirit animal was and I was certain the quiz would get it wrong.

Well, surprise, surprise, my spirit animal is The Bear. Ha! The questions really were seemingly random, but somehow, someway, it turned out right.

Bear really does have my back.

Straw houses: feeling a bit blown away…

I’m in a funk. The kind of piss poor and discouraged frame of mind that has left me wondering just how much more I can handle.

Of course, I know exactly how much—whatever life throws at me. In fact, I’ll borrow a quote from an article in yesterday’s NY Times (and originally quoted from Samuel Beckett): ‘I can’t go on. I’ll go on.’ The beautifully written opinion piece from which I snagged the Beckett quote was composed by Dr. Paul Kalanithi, chief resident in neurological surgery at Stanford University. Diagnosed with advanced lung cancer at the age of thirty six, Dr. Kalanithi has been learning how to navigate the tangible (statistics) versus the intangible; hope. You can read his thoughtful and moving commentary at this link: How Long Have I Got Left?

It’s cold, windy and dreary outside. At times like this it is my habit to note how happy I am to have a home. Only, right now I kind of don’t. Which is not to say I’m homeless. I’ve been temporarily evicted–make that evacuated–from my own apartment. A week ago I traced an unsettling dirty foot smell to the utility closet. There was standing water on the floor all around the hot water tank. I sent an email to Mark, the wonderful maintenance man by day/sometime drag queen by night. He called me within an hour (leaks are the chest pains of the world when it comes to apartment triage). His thinking was that it might be a loose gasket in the garbage disposal, as the sink was directly adjacent to the utility closet. He said he’d come by in the morning.

The next day the floor of the closet was dry. I ran the disposal, but no water appeared. I took a shower–to test the water heater. Again, no dampness. And then, just to be thorough, I started the dishwasher. Bingo!

Long story short, the dishwasher had a cracked drum which had obviously happened prior to or during installation. What may have started as a slow leak (clearly unnoticed by prior tenants) was now a gush. And bleeding up the drywall behind the dishwasher was mold—the black, nasty kind.

I was calm at first. Took myself to Five Guys and had a burger and a think. I followed that up with some internet research on black mold; some of it quite alarmist. The most reasonable source of information was from the EPA and CDC. I have a known allergy to mold and after a bit of reading I concluded that I was showing signs of acute exposure, as my eyes had been red and irritated for weeks and there was a rash on my wrists as well. And, of course, I’d been coughing. Clearly my lungs were at risk. Everyone involved quickly came to the same conclusion–I’d need to vacate my unit while the mold was remediated.

Fortunately there is an empty apartment in the lofts; a showroom of sorts and it is equipped with an airbed. I went back to my place and grabbed some clothes, sheets, a towel, a plate, a cup, glass, fork, knife and spoon. My teakettle and my laptop. Medication. I turned the forced air heat off and Mark and I plugged in some electric heaters. Jim from Servpro came by. He assessed the situation making use of a cool little device that picks up the temperature differences in moisture, and then he made his recommendations. The area around the mold would have to be contained within a ‘tent’ constructed from strapping and plastic sheeting. Servpro employees would then suit up before removing the kitchen cabinets and replacing two sections of drywall. Two big air scrubbers were plugged in and I said goodbye to my stuff and decamped down the hall.

That was a week ago. The air intake for the furnace is located just behind the moldy wall and as indicated by air quality testing, the heating vents were pressure cleaned. A natural product made from botanicals (Benefect) was fogged throughout the unit. Today, the drywall was replaced and the wall repainted. New cupboards and a dishwasher have been order and will be installed as soon as they arrive. I hope to be back home within a couple of days. 

Of course, I’ve got more on my plate/mind than housing. Tomorrow I have a chest CT scan as a follow-up to an appointment with Dr. Shaw two weeks ago. At that time I learned that I do not qualify for the trial of the new ALK inhibitor, PF-06463922. There is a requirement that your last treatment was an ALK inhibitor and you showed measurable progression while on it. The fact that I had chemotherapy after coming off of LDK378 means that I am ineligible.

As a patient, I struggle sometimes with the rigor that is part of a clinical trial. The need for clean data (intrinsically related to FDA regulations) mandates a strict protocol for drug trials. That doesn’t always leave a lot of wiggle room for what might seem like compassionate and humane clinical decisions.

I have a friend who is also unable to qualify for the PF-06463922 trial because the tumors in her lungs have responded so well to treatment. However, she has numerous brain metastases and PF-06463922 is rumored to be effective at treating brain mets. In the strangest of catch-22’s—the current lack of cancer in her lungs means that there is no way to measure the effectiveness of the trial drug on thoracic neoplasms and therefore she is not a suitable subject.

There is a required two week washout period (again in the interest of clean data). This is tough, as many if not most patients with ALK mutations experience a flare of disease when coming off of ALK inhibitors. Again, I feel torn between the future (FDA approval) and the present, the urgent need of patients with ALK (and ROS-1) mutations for effective inhibitors.

In my case I will likely go back on Crizotinib, now marketed as Xalkori and available by prescription (so this time I, or my insurance, will have to pay for it!). Once I’ve shown progression, than I can get back in line for PF-06463922. So, it’s a toss-up. I hope the Xalkori is again effective for a sustained period of time, but I also don’t want to lose a chance to get on trial.

I’m feeling frustrated, for certain. On so many levels. I have been living an unsettled life for some time now. But, I continue to have much to be grateful for. A caring and responsive landlord. My amazing oncologist. And my innate tendency to persevere.

Blow my house down.