Tag Archives: lorlatinib

C’est moi

Freethinker: a person who thinks freely or independently : one who forms opinions on the basis of reason independently of authority especially.

I view the world from two distinct lens. Natural law (an observable law relating to natural phenomena) versus human constructs. And I really, truly only respect the former.

Although I would argue this is a sensible approach to life, I often run afoul of those entities which either hew to or consider themselves The Authority. Undoubtedly this viewpoint started early in my life, when so-called rules got in the way of whatever activity I had planned. My response to being admonished by my parents and or teachers– ‘You are not the boss of me’ was certainly uttered only under my tongue after the first few retorts resulted in a spirited spanking.

Tall, tom-boyed, gap toothed, left-handed, atheist. Non-normative comes naturally to me. Which is not to imply that I am always well received.

What is a breath of fresh air to some is a pain in the ass to others. Just ask my soon to not be landlord.

Or the pharmacist who would not refill my prescription (for a drug I have taken for fourteen years) simply because there was an error in the way it had been transcribed, with it reading both every seven hours and twice a day.

One week later I finally said to him, ‘You know, it doesn’t matter what it says on the bottle, I will take those pills as often as I want to anyway.’ Note added to chart, I would imagine.

Fortunately my oncologist is on board with logic and is a goddess of empathy. As the scrip was for ativan and I was coming off of two sleepless nights per restarting lorlatinib, I was feeling a little desperate. Saturday night I messaged her. She was out (on a date with her husband, I hope) and yet stopped what she was doing to call the pharmacy on my behalf.

That night I slept like a baby. Dreaming dreams unschooled and unkempt. Authority free.

Never really gone

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.

Hurry hurry hurry up

So. I need a 4th generation ALK inhibitor. Stat. And I’m not encouraged by the fact that it’s been almost five years since lorlatinib, a 3rd generation ALK inhibitor, became available in clinical trials.

And although no one would argue that the 6.8 years of median overall survival that is now a statistical probability for ALK+ patients is a good thing, I can’t help but believe it may have negatively impacted the urgency to identify further ALK inhibitors.

Over here in Linnea Land we are feeling that urgency thing big-time.

Today was scan reviews aaaaaaand……just as I expected the news was not cheery. Continuing progression. Not rapid and yet decidedly of the rampant variety. Upon further questioning, an estimated three to six months until lorlatinib is not going to be enough. Which would be okay if there was in fact anything else.

Symptomatically, I knew as much. A nebulizer is being delivered tomorrow and I will once again become an albuterol junkie. Breathing is some necessary shit and I need to get mine back on track.

Me.

Last weekend I was in Colorado for my niece Mesa’s baby shower. That, and a much needed break from my own reality. Yesterday morning I sat in this egg shaped chair, my sweet spot, and said to my sister Bink: ‘I’m just going to stay. I mean, why would I go?‘ Bink and her husband Greg brought me a smoothie and a latte each morning and a martini every evening. The life, y’all. But my own reality show was calling and I boarded that airplane back to Boston anyway. This morning I was at Yawkey, not eager and yet ready to receive that reality check, gently delivered by Goddess number one, Dr. Alice Shaw.

Sweeeeeet spot. Notice the empty smoothie glass. And that Colorado sunshine.

After an appointment with Goddess number two (my social worker, Mary Susan Convery), I walked to the Boston Common to meet a date because even when, maybe especially when the shit goes down this hard, you need to just keep on living. As loud and as large as life will let you. And sometimes, even larger.

The gorgeous Boston Common.

Personal skinny

I had my every six week oncology appointment yesterday. Echocardiogram, labs, and a consult with Dr. Shaw’s nurse practitioner Jen Logan followed by a visit to my social worker.

It was an opportunity to double back and clarify whether or not the way I perceive my current situation is accurate. And, it would seem, I hold no illusions.

In a nutshell. My cancer is yet ALK+, and therefore partially responsive to inhibition with lorlatinib. However, the two newly acquired secondary mutations are preventing the lorlatinib molecule from binding as completely as before. Hence, the resistance. And–unfortunately–these acquired mutations are not actionable; there is no effective inhibitor for either of them.

Fortunately, my cancer is not aggressive. Nor is it indolent–but after fourteen years, we have a pretty clear understanding of how fast it grows.

Simply put, barring any new developments, I figure two years.

That can feel like a little or a lot, depending on your perspective. And as I have already wrapped my head around a much shorter time frame (3-5 months) I can do this.

However, it is also important to remember that although I am talking about a probability, possibility is not out of the question.

To this end, Jen assured me that Dr. Shaw is reaching out to both chemists and researchers urging them to come up with a magic molecule. It could just happen.

If it doesn’t, we can try a combination therapy. However, unless there is some not yet identified synergistic effect, it is unlikely this approach would be successful for my increasingly resistant cancer.

Worse comes to worse, I could return to chemotherapy (this would be the third time) in an effort to abate symptoms and possibly stabilize the cancer.

As we finished talking about possible scenarios, Jen asked me if there was anything I was particularly scared of or worried about.

I told her that I was sad but not afraid. And still hopeful. As for worries, two things. I’m not crazy about the way I’m going to die. I’d like to remain calm and I understand that not being able to breathe is going to make me feel panicky no matter how much self control I exercise. But my biggest worry is my three kids. They are all grown-ups now (something I am so grateful I got to experience) and I know they’ll be fine but we’d all prefer to have their mom hang around.

It was hard but also good, to speak of the future and the potential lack thereof. Jen asked me how I keep my cool and I told her it was time and practice. This is not my first death rehearsal.

xo

Oh Lorbrena

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 the taking of the meds? I need to be on it.

Going in

So tomorrow is the big day; my fifth needle core biopsy.

Rather like a space probe, the purpose of this procedure is to look closer; to learn more about the nature of my cancer so that we may make informed treatment decisions. 

My very first biopsy was the most memorable. Four days earlier I had heard the word neoplasm for the first time. In the days hence, I had read up on lung cancer. The statistics were dismal but my differential diagnosis had left room for other conclusions–a recalcitrant pneumonia or a fungal infection.

When they wheeled me to the biopsy room, the patient before me was a prisoner; cuffed and accompanied by two officers. The physician who performed the procedure first marked the point of entry with a black dot–a dark star of a tattoo. As he guided the needle between my ribs he studied the image on the CT scanner and remarked ‘I am almost certain this is a fungal infection. There is no way a young non smoking woman such as yourself could have lung cancer.’

Post biopsy I was to lie still without speaking for several hours. This was made more difficult by the fact that one of the attendants recognized me–she had been a clerk in a store I patronized–and she, apparently unaware of my restriction, kept trying to engage me in conversation.

The next morning my world turned upside down, when I learned that the radiologist was so very mistaken. Young, non smoking women such as myself could get lung cancer.

My next biopsy was almost three years later. It confirmed metastatic spread and I, a IB at diagnosis, was restaged to IV. However, we would also learn that I was positive for an EMLK 4-ALK fusion gene; ALK+. Four months later I went from having no options to enrollment in my first phase I clinical trial, for crizotinib.

Three years later, prior to enrolling in a phase I trial for ceritinib, I was biopsied yet again, in order to better understand my mechanisms of resistance to crizotinib. An acquired secondary mutation, S1206Y, was identified.

After progressing on ceritinib, I had yet another biopsy. The hope was that I would be positive for PD-L1, making me eligible as an early participant in a clinical trial for immune checkpoint inhibitors. Disappointingly, I was not, however it was revealed that I had now acquired yet another secondary mutation, G1202R. This particular mutation was more problematic than S1206Y, as it conferred resistance to all available ALK inhibitors and it was at this point that I returned to chemotherapy, carboplatin and pemetrexed, until lorlatinib (which shows efficacy against G1202R) became available in trial. Some of the tissue from my biopsy was used to attempt to start a cell line as well as build a mouse model of my cancer, but neither proved successful.

So, here I am, once again at a crossroads and seeking direction. Tonight I will sleep at my friend Diane’s house and in the morning she will drive me to MGH. I look forward to the anesthesia (yeah, I’m kind of a sensory freak and I’m not gonna lie, I like going under 😉 ) but I dread the part where you wake up with a dry mouth and then have to lie there unmoving/not speaking. If the biopsy is uneventful, I will go back home with Diane. However, every other time I have suffered a partial pneumothorax (collapsed lung)–a ticket to one night’s stay in the big house.

It is what it is. I am a traveller who’s had a long run on a clear stretch of road; for that, I am exceptionally grateful. Now it’s time to get my bearings and to figure out the best path forward.

xo 


I did it again

Got older, I did. Woke up this morning to the ripe old age of 59. Yup. A feat that not so long ago I thought impossible.

Now I’d be lying if I said it was getting easier, this having of the birthday. Like that throw away phrase ‘just breathe’, what may be easy for some is a hell of a lot harder for others. But I’m determined to keep doing it, for as long as I am able. Possibly longer.

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Yesterday my friends in the lofts threw me a surprise party. Both my sons were in attendance as well and it was a really special treat.

This morning I left my house at 6 am for my annual mammogram. Later today I see the vaginal/vulva specialist to address some uncomfortable side effects potentially related to treatment with perhaps a bit of aging thrown in. Pressed, poked and prodded. The indignities of keeping it all in working condition. But, viewed in another light, a privilege.

I love this body of mine. We’ve been through a lot together with more to come. And the least I can do is to try to take care of it.

To that end, August and I will head to the gym later today. And then this evening we are going out for sushi and perhaps a show. In most respects, just another day. Which is exactly what I wished for/wanted 🙂 .

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