Tag Archives: ALK+ lung cancer

The ups and downs of being the exception

Yesterday was Rare Disease Day. Now y’all know how I feel about days. However, this year this one caught my attention.

The definition of a rare disease in the US is one that affects 200,000 people or less. Approximately 12,000 people are diagnosed with ALK+ lung cancer annually. However, given the amount of time ALK+ has been a thing (since late 2007) as well as our still high mortality rate, we are a rare disease.

Let me tell you about when I found out I had ALK+ NSCLC. It was August of 2008. And to the best of my knowledge, only three other people had been identified as ALK mutants.

Lonely does not begin to describe how it felt. However, I also experienced hopefulness–I was, after all, a dying woman who had suddenly been thrown a crumb (a mutation–targetable–with a phase I clinical trial at my very hospital). Gratitude, as well, that a big ass pharmaceutical company like Pfizer would have taken on such a rare disease.

By the time I was diagnosed with ALK+ lung cancer, the first of my kind would have passed away. I never even knew his name. However, numbers two and three would become fast friends of mine. Unfortunately, number three, Kevin Brumett, passed away in the spring of 2009. However, number four, Sarah Broom, and I had the time to develop a very close friendship. Sadly, Sarah passed in 2013.

By now, thousands of people have been diagnosed with ALK+ lung cancer. We have become a large, extended family.

I am, I must suppose, the longest surviving ALK mutant. However, so very much has changed since 2008.

There continue to be new treatments, attested to by the fact that I am currently enrolled in my fifth clinical trial (Alice corrected me last week–lorlatinib plus chemo was not a trial. I apologize for exaggerating my credentials ūüėČ ) And my ALK family is one to be flipping proud of. The energy they have for support, raising awareness, and generating funds for research is incredibly humbling.

In the lingo of cancer, unexceptional is a good thing. However, in another sense, everyone I have met on this path is truly exceptional. In the best of all possible ways.

xo

Alive and well…again

That ugly image of the open wound is my thumb. It is but one of the nine cuts that currently reside on my fingers. No amount of topical steroids, bag balm or liquid skin will make them go away.

I am also dealing with pustular acne. At the moment, maybe nine little spots. I am given to understand that it can get a lot worse.

One is supposed to leave this sort of thing alone. However, I dare you to simply walk around with a pus-filled little (thank god for little) lesion on your face. No, my ego is sound but not that sound. Anything with the word pus in it must go.

Fortunately the topical antibiotic seems to help. Help is nice but I’m shooting for eradication.

I share this with you (TMI, I know) because, once again, I feel it is important to stress, illustrate, underscore the hoops that those of us with cancer will jump through just to stay alive.

Yeah, I am thrilled about that 57% response. Beats no response or progression all to hell. However, side effects that include spontaneously splitting finger tips and acne of the pustular variety are their own special form of devil’s stew.

So ye who are naturally resplendent in health, rejoice. And regard, with both compassion and respect, your fellows who endeavor to become healthy through unnatural means.

Yours, in both gratitude and frustration.

Linnea

xo

The numbers are in

What you are looking at are my before and after scans. Evidently I was mistaken about any previous scans after starting the trial–this is my first one. Out the door goes the fever theory (maybe–I kinda like the image of the cancer being incinerated). At any rate, as I am on my back while in the scanner, that is my left upper lobe on the right side of each individual image, and my right on the left. And the scan on the left is the most recent one.

This represents, according to RECIST, a 57% response. If you look closely, there was a whole wad of schmutz on the bottom of my left lobe which has just about disappeared. And the greatest area of consolidation, on the upper right of that lobe, is much less diffuse; some adjacent tumor smaller. There was also some activity beginning on the bottom of my right lobe which is no longer discernible. Without question there’s more unimpeded volume/room for air to circulate–ie: breathe.

Just call me a happy camper. Next on the agenda? I want to boost that response to 70%. And then I plan on sustaining it.

xo

The push and the pull

My new therapy, or rather combination of therapies, has afforded me more energy. I suspect it is the lorlatinib.

This has felt wonderful. I’ve taken advantage of the amped up feeling to get some major projects done. Long (and rather sad) story short, the vintage clothing business in its current incarnation is kaput. The combination of a pandemic and some major miscommunication between partners and we are no more. Circumstances willing, it shall rise again as a small, manageable, online version. But first things first.

I had to relocate the stock and furnishings, first to one storage unit and then a major downsize to a smaller one. I figure it’s as if I’ve stacked several cords of wood at this point.

There was also an old wooden shelf–heavy as hell–that I wanted to take to my studio. My friend Brian helped me load it into the back of my 4-runner. However, I got that puppy out and up to my studio by myself. My deceased mother (the queen of do it yourself) would have been proud. It was a classic combination of brain and brawn, as I employed physics (tipping and spinning across the parking lot) as well as brute strength (shoving it down the long hall).

My back is pissed as hell right now but there is something oh so satisfying about hard, physical labor.

Of course I wish I could tell you that this surfeit of energy was a positive indicator per the effectiveness of my current therapy.

Not. It is, I am afraid, merely a smoke screen. My shoulder feels better (go figure, after all the lifting) but my lungs sound like shit. When I lie down at night the audible wheeze is often enough to waken me from a deep sleep. A strange sort of bubbling going on as well.

Gross, I know. Even more so if it’s your body. And, fucking A, it means the cancer is just perking along. My big plans and hopes and dreams be damned.

So there you have it. In as plain a language as possible. I am alive but, well, not well. Still strong enough to fight but I’m going to need some more effective tools if I hope to gain some ground here.

And I do. I really do.

Scan skinny

I had my scan a week ago and Dr. Lin called me the following day with her impression–Alice followed up on Saturday.

One of the most difficult aspects of being an oncologist is trying to keep both body and hope alive for patients. Jess (Dr. Lin) and Alice both felt the the subpleural opacity in my left upper lobe was possibly less dense than previous scans–‘more aerosolized’ is the way Alice put it. Maybe whatever the heck that is (never definitely labeled cancer) is partially resolving, and therefore accounting for the improvement in my breathing. It would be nice to think so.

I did not receive the official read of the scan until today and I must say, it is lackluster; said with all due euphemism.

Keeping body and soul together is getting to be more difficult for me as well. Neither of the last two treatments would appear to be a panacea. And social isolation is sapping me of my usual reserve of joy. These times were not made for extroverts.

Now my job is to just hold it all together in what sometimes feels like impossible circumstances—if I can avoid getting COVID-19 and keep this cancer from moving from a brush fire to burn the whole goddamn house down, well then I might be around when another treatment becomes available.

My general MO is to overcome and forge ahead—if you told me I had to walk 100 miles today I would be game to try. Laying low is an entirely different animal and I’m not gonna lie, one heck of a reach for me. But I am going to do my darnedest to hang in.

 TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST¬†COMPARISON: Chest CT dating back to 1/18/2019
FINDINGS:Lines/tubes: None. Lungs and Airways: Status post left lower lobectomy. The central airways are patent. There are new groundglass and tree-in-bud nodules in the anterior right upper lobe for example on images 49-51. There are also multiple enlarging subsolid nodules in the right upper lobe for example image 49 nodule measures up to 8 mm compared to 5 mm prior. Multiple nodules in the left upper lobe has also increased in size and attenuation compared to recent prior, for example spiculated nodule in the right upper lobe on image 53, measuring up to 10 mm compared to 9 mm prior, image 44 nodule now measuring 4 mm compared to 2 mm prior, and subpleural nodule on image 43 measuring up to 8 mm compared to 7 mm prior.  The dominant subpleural consolidative opacity along the lateral left upper lobe is essentially unchanged compared to recent prior now measuring 17 x 29 mm (image 64). The confluent consolidative opacity at the left lung base is without significant change in size compared to recent prior, measuring 77 x 20 mm (image 80). Pleura: Stable small loculated left pleural effusion with associated pleural and interlobular septal thickening. There is unchanged biapical pleural-parenchymal thickening/scarring, left greater than right. Heart and mediastinum: The thyroid gland is normal. Stable mediastinal and hilar lymph nodes measuring up to 6 mm in short axis, for example low pretracheal node on series 302 image 42 and AP node on image 46. The cardiac chambers are normal in size. There is no pericardial effusion.  Soft tissues: There is no significant subpectoral or axillary lymphadenopathy. Abdomen: Please see separate CT abdomen and pelvis report of same day.  Bones: There is moderate spinal degenerative changes. No suspicious lytic or blastic lesions. 
IMPRESSION: Lung cancer surveillance status post left lower lobectomy: Subpleural consolidative masslike opacity along the lateral left upper lobe is unchanged compared to most recent prior but remains suspicious for primary lung malignancy. Stable small loculated pleural effusion with interlobular septal thickening consistent with lymphangitic carcinomatosis. Enlarging pulmonary nodules bilaterally since at least 7/5/2019 suspicious for progression of metastatic disease. New groundglass and tree-in-bud nodules in the anterior right upper lobe may represent inflammatory or infectious process. Attention on follow up is advised.

Weary

Not in spirit, not in soul. Just body.

This part of chemo I had forgotten. A bone numbing fatigue that even a consummate overcomer such as myself cannot override.

It is difficult to be patient. My mental energy remains exultingly high. I have plans, big plans. And much to accomplish.

In three weeks I shall have my first scan and will know better whether this hit on my physical self has been for naught. Of course I remain exceedingly hopeful that my cancer is also struggling. And if that is the case, well, then I can continue to justify this reduction in stamina.

I have an agenda. A clear agenda that keeps me incredibly focused. Tolerant of discomfort. Stubborn and steadfast. Eyes on the prize. Eyes on tomorrow.

xo

Scaling

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.

Something worth fighting for.

xo

Oh girl

I think I got this.

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.

This girl. This girl wants to live.

Another dawn, another day

A story that bears repeating. Pun intended ūüôā

I found this greeting card yesterday at the local Market Basket. It was meant as a birthday card (who knows why) but I shall co-opt it to my own purposes.

This is not the downedest I’ve been (made up word intentional as well). Nope. Almost seven years ago, post progression on my second ALK inhibitor, I was getting chemo yet again. And although I was married at that time, I truly felt alone. 

However, I’m pretty adept at turning inward for the things I need. And what I needed more than anything else was for someone to have my back. Literally and figuratively, as I desperately wanted to be held.

And so I turned to my imagination. Tried out some animals in my head (yeah, I’m a weirdo, I know). A wolf, a lion, and then a bear. Bear seemed just right. Kinda cute and cuddly looking but also potentially lethal. Just what I was looking for in a pal.

In my mind, bear was holding me. Big spoon, to be more explicit, those sharp claws resting gently on my forearm. ‘Bear,’ I said. ‘If you will just stay beside me while I’m going through this shit, I’ll make a deal with you. If I die, you can eat me. But if I don’t, you can’t.’ I could feel the bear’s breath on the back of my head. Bear didn’t budge.

Right there and then I decided bear would be my spirit animal. 

Now and again, I call bear back. Although as time has gone on, I’ve needed him/her less and less. When I’m feeling strong, it’s a lion I imagine. 

Having bear show up yesterday was a reminder that I’m not alone. Now there’s a chance that bear is hungry. But a deal is a deal and I’m not planning on being dinner.

And these are life lessons

So. I want to have a little chat about love and will. Love first.

The last five years have tested my heart in ways I never imagined. My interpersonal relationships, once tied up in a tidy package called family, totally unravelled in the summer of 2014. My mother died several days after I took my first dose of lorlatinib. A month later, I was served with papers and my divorce moved from somewhat amicable to highly contentious.

The initial side effects of lorlatinib (I entered trial in the third cohort, dose escalation phase) were unanticipated and horrific. Arthritic neuropathy so severe I awakened one morning to hands that felt like blocks of wood. Hallucinations at night, a sense of disorientation and unreality during my waking hours. Emotions that were both unfamiliar and impossible to modulate. An inability to recall much of anything including wide swathes of the past. And my short term memory was totally fried; I could no longer think in a linear fashion and became incredibly disorganized.

I was alive but a friggin mess. Struggling with the details (cooking, paying bills, getting through that awful divorce) while also adjusting to a totally different lifestyle.

Eventually I began to revel in my freedom and the fact that I was feeling physically strong again. Sadly, my increased irritability and lack of inhibition meant that I got into arguments with far too many people. Some would come to understand that this was beyond my control, others have yet to forgive me.

It was, at best, an imperfect life. At times I was incredibly sad. But I would drag my ass out of bed every single day and go outside and walk. Sometimes for miles and miles, taking in the (also imperfect) world around me.

I was learning about unconditional love. I didn’t need to be cancer free, my relationships didn’t need to be shipshape, my home could be in disarray. I loved life and eventually came to truly love myself as well. Before long I realized that simply being ok was enough. More than enough.

And of course while I was being schooled in unconditional love I was also coming to understand the role of will. There were times (many times) where I thought it was all too much. One crisis would be followed by another and I was dogged by depression. However, I began each day with ‘I’m alive, I’m alive, I’m alive’; my form of litany and a sincere expression of both wonder and gratitude. I also kept walking–convinced that being physically strong was one way I could take back some control.

Eventually my brain began to heal; old memories like a field that had been scorched but now sending up fresh shoots. And just as I was growing stronger physically, all the trials and tribulations were building emotional muscle as well. When I would go to the gym with my son August he would encourage me to always push harder. ‘It’s not going to help until it hurts’ he would say. Oh how true; how applicable to life itself.

So here I am. Once again facing the unknown and yet, as prepared as a person can be. If will alone could keep me alive, I’d be immortal. It can’t and it won’t but I have no doubt that a strong will is only a good thing. And life? Well, as my love is unconditional, it shall not disappoint.