‘When there is dust rising in a high column, it is the sign of chariots advancing; when the dust is low, and spread over a wide area, it betokens the approach of infantry. When it branches out in different directions, it shows that parties have been sent to collect firewood. A few clouds of dust moving to and fro signify that the army is encamping.’ Sun Tzu, The Art of War.
My enemy, despite heavy artillery (lorlatinib plus carboplatin and pemetrexed) continues to advance. Hence the need for another approach. On Tuesday I have yet another CT scan in preparation for the upcoming clinical trial–it will be interesting to see if the fact that I am feeling better is supported by radiographic evidence. Either way, I think it is time to surprise cancer, which has grown both in size and cockiness.
7.1 cm is not my friend. Nor is lymphangitic carcinomatosis.
I don’t know if it was the Captain Marvel movie (love me some scrappy heroine), the hot water with lemon that my friend Peter prescribed to start my day, or Jenny Ro’s bone broth soup. It couldn’t be the chemo, could it?
This girl has turned a corner. As of Monday evening, after a nine hour day of physical labor (I am crazy, but I needed to get the rest of my art stuff out of my old apartment), I have felt not good but GREAT.
Physically strong, almost zero wheeze (what’s up with that?), I am now of the mindset that I am going to live.
Powerful, powerful feeling, that. And just the boost of confidence I needed.
This weekend I am going to spend a couple of days in my new studio space. Making art. I could cry just writing that sentence.
This means I am likely to go another round of chemo prior to starting the clinical trial. As long as I wasn’t feeling any improvement, that was a dismal prospect. However, there is nothing I won’t do if I believe it is capable of knocking down my cancer.
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.
Not gonna lie. The unholy combo of lorlatinib, carboplatin, pemetrexed, MOVING has been kicking my ass. Oh yeah, and cancer. Two twelve hour one day drives to Toledo and back were not as restful as one might assume. My energy is shot, my skin is shit (long term side effects of lorlatinib not helped by the new stressors) and last night I fell to sleep just imagining that I was a baby held in some loving arms. Breast fed, not with a bottle–the route my hep fifties mom went 😉
Yep. I am spent. Second infusion is tomorrow and steroids came to my rescue today.
Nasty, nasty drug that one. Insomnia, constipation, rage. But also an unnatural sense of energy just when mine was flagging. And not one to waste an opportunity, I got a hell of a lot done today. This new little home of mine is looking just like that—a place that someone would like to come and stay awhile. Maybe hunker down a little.
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 hit the wall that is week two. Massive fatigue. Rheumy eyes. Gums that weep, a mouth that feels like sandpaper. Nosebleeds.
Loose of bowel, I’ve lost five pounds. Neuropathy is both afoot and at hand.
Numb and bloody. Edges and corners raw. But alive.
Alive, alive, alive.
And happy about it.
I had the thought that this is what cancer reduces existence to. Gratitude even in misery. But then I rethought that thought. And this time it came out this is what cancer elevates existence to.
How fucking fantastic is that. This, my friends, is unconditional love. Life, so treasured, that even when it’s all a bit raggedy it remains sought after. Beloved. Adored. Precious.
I drove myself to and from the hospital yesterday. No problemo. Early morning breakfast with my daughter, and then an appointment with a neuro onc. Two weeks ago I started getting this very brief and yet excruciating pain on the top of my head. It lasts seconds, is intermittent and unpredictable in onset, but is always in the exact same place. And it stops me in my tracks.
My first thought was an unusual presentation of shingles. But given that I am a cancer patient one must always rule out other possibilities. My exam demonstrated decreased sensitivity on the left side of my body, top to bottom. My brain MRI’s have been positive for multi infarcts for some time now (little strokes) and a slightly larger stroke is a possibility. As is–the highly unlikely–scenario that I have a tumor or some other structural impingement. This finding is seemingly unrelated to the pain on top of my head which could be trigeminal neuralgia or maybe even just some weird neuropathy. At any rate, I’ve not had a brain MRI for a good long time now and so one is scheduled for the 19th, when I receive my next chest CT scan. This will necessarily be with contrast, but evidently better contrast than before.
After that I was joined by my friend Jenny Ro, who you’ll hear more about later. I met her while I was preparing for my TED talk and we just immediately clicked. She was gracious enough to offer to be my chemo buddy yesterday. My son Peter joined us for a couple of hours as well, lending an almost festive feel to the affair.
First up was scan review, and it was as I expected. Overall progression. Not rampant but persistent. Alice said she was glad we’d decided to begin treatment.
And then, up to the eighth floor and infusion, where I was immediately recognized by a phlebotomist. That’s what happens when you’re a lifer. Some saline, ten minutes of carboplatin, more saline and then thirty minutes of pemetrexed. In and out.
It was necessary to stop at the pharmacy as I was out of ativan and needed some scrips for anti emetics as well. And some tortilla chips to go with the guac I’d stocked up on the day before. That, some cut fruit, and turmeric milk all went down nicely.
I slept like a baby, waking once in a cold sweat with tears all over my face. No idea why.
Today I am feeling a little bit more like I’ve been run over by a truck, but again, all manageable. Alice texted me and I said that if I continue to feel ok, then next time I’d like to consider ramping up the carbo dose. Of course, I have a scan prior to that, so if it’s not doing anything, I suppose there is no point. But my fervent hope is that it is.
I had an oncology appointment in Boston today and met one of the new members of my team. Alice will remain my oncologist, but her role will necessarily be more limited than before. I told this new doctor that I felt my cancer was now in my right lung as well–I can both feel and hear it (wheezing/crackling). She took a listen with the stethoscope and confirmed.
So those horses are not only out of the barn–they are moving to another pasture.
Obviously that’s not a good thing. It’s a damn shame that lungs are an essential organ, but it is what it is. And what it is, is that it’s getting harder to breathe.
Time to spring into action. Given the fact that I have some upcoming big plans (a panel at Takeda, my TED talk, birthday, Thanksgiving) we are holding off until December. Scans on the 2nd, first infusion on the 5th.
Originally the plan was to add carboplatin and avastin to lorlatinib. However I have already had four rounds of carbo as well as four rounds of cisplatin. A lot of platinum for one girl. My peripheral neuropathy is rather severe, particularly in my feet. On various occasions I have walked around unaware that I had cardboard liners, stones, or wet socks in my shoes. The bottom of my feet are almost totally numb, and although I have adapted to this unsettling scenario (only an occasional stumble) we certainly don’t want it to get worse.
So Alice felt carbo was not the best bet, and that perhaps we should go with pemetrexed instead. We were going to add avastin, in the hope of hitting the cancer with a bigger hammer. However, I have been coughing up some blood and also have had small abrasions become larger wounds that were loathe to heal–both indicators that I might be at greater risk for bleeding in my lungs secondary to avastin.
There is a distinct possibility (and a big, big hope) that chemotherapy will have a synergistic effect with both lorlatinib and binimetinib–the drug I would receive in conjunction with lorlatinib in the next clinical trial I shall enroll in. Given that, I want to make certain our approach is not tepid. As avastin has been ruled out, I asked that carbo be added back in–but at a lower dose. If I tolerate the first round, we will continue. If not, then it will simply be pemetrexed.
I had a vitamin B12 shot today and will begin taking folic acid in preparation for infusion. I am ready but also understandably leery. This will be the first time that I have undergone chemo while living alone. That in itself should be a bit of an adventure. However, I think I know what to expect.
First we reviewed my scans and discussed the findings:
Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.
Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis.
Additional sub solid nodules in the left lung are stable or slightly increased in size compared with the prior exam.
Slightly increased small loculated left pleural effusion.
No surprises there and I am grateful that the word slightly predominates. It is clear where this trend is going but it would also seem that we have time to figure out what the best approach shall be.
First, I am to start nebulizing in an attempt to address my bronchorrhea–the source of the persistent crackle in my left lung. And should it get worse, there is the option of combining pemetrexed with lorlatinib–which would mean leaving the trial and getting lorlatinib by prescription. Avastin could be added to the mix for possibly greater efficacy. Alice is going to start the ball rolling in that direction so that I can apply for financial assistance to help pay for the deductible on lorlatinib–just in case. However pemetrexed kicked my butt energy wise when I was on it seven years ago, so this course will only be as needed.
Most exciting is the news that Alice is going to be opening her own trial at MGH in a couple of months–combining lorlatinib with a MEK inhibitor–binimetinib. She feels this is something that could be effective in my case, so it is my first choice.
Also encouraging is what has been going on behind the scenes in Alice’s lab. My last biopsy identified three secondary acquired mutations. One, G1202R, I had previously and lorlatinib is likely at least somewhat effective against that yet. The other two are newly acquired: S1206F and G1269A. S1206F is rare; Alice has not seen it in any of her other patients. However G1269A is becoming a more common mechanism of resistance to ALK inhibition, along with G1202R.
Alice then shared with me that they have been attempting to make models of all the possible combinations of my three mutations, so as to test drug against them.
I tell you what. This is not the Cadillac of health care, it is the Bugatti La Voiture Noire. It is incredibly humbling to understand the astounding degree of highly personalized effort being expended in the interest of saving my ass. So I damn well better show up.
Yes. That branch just got a little bit thicker–it might even be sprouting some new growth. Alice’s parting words to me were ‘If anyone can do this, you can Linnea.’ To which I responded, ‘If anyone can do this, we can, Alice.’
life and breath: outliving lung cancer 