I have now been in phase I clinical trials for two Pfizer drugs—crizotinib and lorlatinib (Xalkori and Lorbrena). A few weeks ago I travelled to La Jolla for a CNN produced documentary. Perks of this project included spending time with rock star researcher Ted Johnson as well as a tour of the Pfizer Labs. And of course anytime I get to see the sun setting over the Pacific ocean, that’s a plus as well.
As for the documentary, it speaks for itself. Give it a little gander. Pfizer, thanks for letting me represent. And for keeping me at this party.
Me giving me encouragement: the Wall of Hope on floor eight of the Yawkey building at MGH. When I first started getting treatment, a secret goal was to one day appear on the Wall of Hope. 🙂
A long, long day. But in the parlance of my kind (the terminally ill), a long day beats a short day all to heck.
First, my life is blessed with a plethora of goddesses. Childhood friends, my daughter, sisters, my many new friends, nurses, phlebotomists, counselors, medical doctors. Men are great and I love a heap of them as well but this group of women has been my consistent go to for the tough stuff.
One goddess was in tow yesterday, my friend Sally: pals since the fifth grade. I am beginning to realize how beneficial it is to have company at these visits, after years and years of going it alone.
I had an appointment with the goddess who takes care of me from the neck up (as I like to say), Mary Susan Convery, my thoracic social worker. She keeps my head on straight.
A quick trip down Charles St for a hug from my daughter (Sally is her actual godmother) and a delicious lamb sandwich at Tatte. And then a long wait in those spaces appropriately called waiting rooms.
Oh, the irony. Those of us to whom time is so precious spend far too much of it waiting.
Anyway, the action got started around four with a visit from the head goddess, Alice. Chit chat about how I am feeling (great for the moment, on that artificial steroid high, my dyspnea temporarily under control.) But I was eager to cut to the chase—how about those scans? She had read them herself and her assessment was that they were mildly worse than the ones in December. Now remember this is while getting chemo so bummer. Of concern is the lymphangitic spread as well as the fact that the slight amount of fluid in the bottom of my left upper lobe is also increasing.
Alice puts more store in symptoms though and mine are not encouraging. Definite downward trend. So we agreed that I’d go ahead and get chemo one more time (and possibly two, depending on timing and tolerance) in the hope that it is at least slowing down progression.
There was a bright spot though and that was in the form of options. I figured we were down to one–lorlatinib plus a mek inhibitor. But Alice described yet another possibility. That after all these years on TKI-s it might be good to take a break. Maybe let my cancer forget some of what it has learned. To try a novel therapeutic, one my cancer is completely naive to.
While getting infused I signed the consent forms for a phase I clinical trial for a drug called DS-1062a; an antibody drug conjugate which targets a protein called trophoblast cell-surface antigen2 (TROP2), which is found in copious quantities on the surface of cancer cells.
This sounds exciting to me–a fresh possibility. But it is going to be intense. First there are the necessary hoops to jump through in order to qualify, including a lung biopsy, heart scan, ECHO, and eye exam. And all that blood, blood, blood (30 teaspoons for the first three cycles).
Every three week infusions but the first week, at least two additional visits. And then for the subsequent nine weeks, I return to the hospital once a week, with a second lung biopsy at week two. It is going to be consuming–that is, assuming I qualify.
But it also has given me fresh hope (I love the luxury of choices).
Good thing. Chemo may not be kicking cancer’s ass, but it is kicking mine. My liver is a tad inflamed–Alice asked me if alcohol might be involved. Truth? Yes. Goodbye to that for the time being. Sally filled me with healthy fluids last night and this morning she made me oatmeal, hot lemon water, and a vegetable chicken soup. I am in good and loving hands.
So yes. Stability or response would have been the preferred report but this feels if not a door, at least a window. And that’s what I need. Fresh air and a bit of a vista to contemplate.
I was exhausted last night. Rightly so, I imagine.
As I lay in bed, I could feel the powerful impact of two different cytotoxic agents on all the various bits of me. Havoc was being wreaked, like some marauder in the garden.
I went with this garden imagery, the cancer in my lungs a persistent and deeply rooted weed. And I pictured it being torn asunder, plucked from the substrate of my flesh, shaken violently, bent, torn, limp, lifeless. Every last cell of it.
When I awakened this morning the sound in my lungs had changed in timbre. The crackle of leather had been replaced with something akin to a broken tea cup. Very fine bone china, rattling around.
Hmmm, I thought. This is an improvement. What was hidebound now feels looser, dryer, easier to dislodge.
When titling my previous blog I had a verb in mind. An action verb.
Chemo is a wall. And–frankly–that is the point. What sucks for me hopefully sucks for my cancer as well. All those side effects are indicators that the poison is going about its nasty little business.
What I’d like to clarify is how I’m taking this. Not lying down.
This particular chemo combo is a small misery compared to what I have experienced in the past. Fifteen years ago I was given a doublet of cisplatin and taxotere. My then oncologist explained, in the bluntest terms possible, that he intended to bring me to the brink of death and then bring me back. All in the name of eradicating my cancer.
Well he was true to his word. That shit blew. And I’d start to feel the side effects before we even got home after infusion. I spent days riding out the storm in my lazy boy chair (dubbed the lazy girl). By the fourth cycle I didn’t have a hair or an ounce of extra fat on my body and I was coughing up what looked like coffee grounds.
Now that, my friends, was hell. And it gave me some perspective. A rocky baseline if you will. Added to the mix was the fact that seven weeks earlier I’d had a lower left lobectomy, not vats but rather the old fashioned way. Ribs spread, large incision. Brutal.
So this is, relatively speaking, a walk in the park. I do feel a tad crummy. But I am also going about my business. As I live alone that means walking the dog, shopping for groceries, cooking. And, because my life is in fact over the top crazy, moving.
Yes. Again. My current situation did not work out quite as I imagined. One of my closest friends understood that this had become a source of stress for me and as fate would have it, an apartment that was located directly across the street from her opened up.
It was now or never and given the possibility that I may feel worse rather than better in the future, it was a no-brainer.
So yeah. Rather than surfing the couch I have been loading and unloading boxes. Yet again. On Wednesday my friend Melinda has arranged for a moving company to take the furniture and the books. And yet another impossible task will have been accomplished. Under ridiculous yet necessary circumstances.
I share this all so that others understand that even though chemo is undeniably unpleasant, it is also doable. This is an important concept for those who have only been on targeted therapies, and who are loathe to consider chemo, because of its bad rap.
In my case, I have a clear and unwavering agenda. It’s this: I really want to live. And I am willing to scale a million walls in order to do so.
Who knows. Maybe chemo works better if you’re not laying on a couch. I kinda doubt anyone has done any research around physical activity post infusion.
I have no fear of heights and I love to scale things. Trees in my youth, some rock climbing in my twenties, scaffolding and the coupling of freight trains in my fifties.
Well, it would seem I’ve circled back to trees and this time I am way out on a limb.
I had my routine scans last Friday. Afterward I texted Alice to let her know I was certain they would show progression, based on my physical symptoms. My scan review was to be this Thursday with my nurse practitioner rather than Alice and I wanted to make certain the two of them talked options prior to my visit.
After Alice had a chance to review my scans personally, I received a text from the Goddess herself. ‘Just wanted to chat. Thanks.’ Alice has been my oncologist for more than eleven years now. I can read between the lines with relative ease and I knew that if my assertion was incorrect–that my scans had in fact showed stability–a reassuring text would have sufficed.
I had a dry run for my panel yesterday morning and Alice was tied up in meetings so it would be quite a few more hours until we had a window in which to speak. Back in the day this would have undone me but years of living with this situation have lent me a certain calmness.
Our conversation was brief but confirmed that my scans do indeed show progression. Likely more troubling to Alice are my cough and the accompanying wheeze from my left lung.
My Thursday scan review has been moved to Friday, and I will meet with Alice rather than my nurse practitioner. We will discuss possible options as well as timing. It all feels a bit like firing a gun with an empty chamber.
And yet I know Alice will come up with something–likely combining lorlatinib with some other therapy. I will keep my ship pointed toward the shore. Hope is not cheap but I have made more out of less.
Once you have cancer a headache is not merely a headache, it’s a potential tumor.
My gallbladder issues–although garden variety in nature–were immediately suspect for liver, pancreas, metastases as sources of trouble. Some scary moments there, as each of those scenarios would have meant a further limitation of options. When running on empty, you want to keep the road as clear as possible.
Fortunately my worst fears (like that headache, always in my back pocket) were not realized.
And in true lemonade from lemons fashion, my little adventure resulted in some marvelous insights.
First, that my family is indeed my rock. Good, that.
Secondly, that underneath the me of lorlatinib, my old, true self is extant.
WTF am I talking about? Well, Alice had me hold drug once I’d been admitted. I went six days without therapy. Lorlatinib comes with a host of strange side effects and within days, some of them began to subside. Alice was the first to notice that my speech was not so slow. And suddenly I was intensely aware of everyone’s cologne–I hadn’t even realized my olfactory had been compromised.
My neuropathy in my feet is so severe I can walk around with pebbles in my shoe and not know it. My toenails have all gotten ingrown while on lorlatinib, requiring surgery on eight of the ten. One is still pretty raw but normally I can’t feel it. Suddenly it hurt like hell.
But, best of all, I started to feel like me. My ability to think in an organized and linear fashion had magically returned.
Sigh. It was but a brief visit with myself, as I started back on drug two days ago. Two sleepless nights later I am once again struggling to complete tasks and my toes are numb.
However, there is comfort in knowing that I’ve never really gone.
Like some fancy fantasy girlfriend, the drug formerly known as lorlatinib has been rebranded Lorbrena. And not a cheap date, Lorbrena. Check out these over the counter prices for a months supply:
However, even given her top shelf status, my Lorbrena is handed over in a brown paper bag to be carted home wino style. A brown paper bag that evidently blends into the surroundings so very well, I simply forgot it was there.
Yep. One whole week without taking my cancer meds. Blame it on stress; they sprayed my loft for bedbugs for the third time this week, on the same day I was getting surgery on four ingrown toenails that are an apparent side effect of hanging out with Lobrena all these years. And change; August and Lily moving out did a number on me. Then there’s memory; I just can’t. Remember. And it’s getting worse with time.
So there you have it. Gotta say, I enjoyed my little respite but starting up again resulted in a full on case of the runs and the shakes; just like our first date so very many years ago. And now, in order to keep this relationship on track, I need to begin (duh) setting an alarm to remind me to take my meds. That is, if I can remember to. Maybe I’ll even start filling out the daily diary (I usually do it in the office and when my nurse comes in, I sing a little song ‘making shit up, making shit up.’ Honestly. I am not non compliant for the sake of non compliance but those diaries are busy work. And, this being 2019, you might think we’d have a more sophisticated mechanism for capturing supposed data than a worksheet. I’m over it.
But I will. Ludicrous and, frankly, almost criminal. First of all, no one needs an annual salary of $27.9 million. What on earth would you even spend that much money on? Purchase your own country?
Secondly, I take this over the top salary personally. I can’t help but feel that my individual contribution (over seven years of my life spent as an early participant in two phase one clinical trials for Pfizer) helped feather this fellow’s fine nest.
It is as if I am the serf and this is my lord. Clinical trials as a feudal system? Not so far off the mark, yet oddly out of place and time in this modern day democracy in which we now (co)exist.
However, I have an idea. Ian C. Read could decide to share some of that massive salary, just as I have so generously shared the fruits of my labor (not to mention a whole lot of plasma).Â
And he could start by taking care of my parking fees.
Boys and girls, the price you see on the package of Advair (thirty day supply) is my frigging copay. Well, it would be if I’d actually taken that little inhaler home with me.
Yep. I’ve got health insurance again, as mandated by the laws of my country. Coverage that is designed for people like me who are lower income. Coverage that barely covers anything.
First, there is the fact that I had to get this insurance two months before the end of the next enrollment period. I had already met my deductible with my last policy but now I’m back to ground zero and unlike my previous policy, this one aims to meet said deductible in one fell swoop.
And….I can’t. I simply do not have the money to pay $528.11 for an inhaler that will last me thirty days.
I’d been hoping against hope that my health would hold until the end of this calendar year so that I could avoid the necessity of maxing out my deductible. Not. I just had scans and a month from today I am scheduled for a needle biopsy, a surgical procedure. Historically, every single needle biopsy I have had has resulted in a partial pneumothorax or collapsed lung. And that means an overnight in the big house; aka the hospital.
So I guess there is no avoiding hitting that deductible in every category. And then it will be January and I’ll start all over again. Hopefully the tires on my car will hold, because income taxes come due in April.
I’ve said this before but in case you did not hear me, I will say it again. It is not tenable.
This is health care in America when you are caught between poverty and prosperity. My income qualifies me as lower middle class and yet, with a chronic illness, far too much of that income goes toward medical costs.
The stress is unrelenting. And, unlike veterans of other wars, there is no agency to make certain that in recognition of my service as a clinical trial participant my medical needs are met.
It’s crazy. All of it. Lousy health insurance. $528.11 copays. And the fact that Pfizer is now poised to make beaucoup bucks off of the experimental therapeutic that I, one of the first trial participants to ever take lorlatinib, (three people in each cohort–does escalation phase–I was in the third) helped bring to fruition. And here I am, unable to pay for an inhaler.
life and breath: outliving lung cancer 