Tag Archives: lorlatinib

Holding it together; each other

*A hug is a form of endearment, universal in human communities, in which two or more people put their arms around the neck, back, or waist of one another and hold each other closely. If more than two persons are involved, it is referred to as a group hug.

The origins of the word are unknown but two theories exist. The first is that the verb “hug” (first used in the 1560s) could be related to the Old Norse word hugga, which meant to comfort. The second theory is that the word is related to the German word hegen which means to foster or cherish, and originally meant to enclose with a hedge.[1]

*Thank you Wikipedia ūüôā

And I hope all of you felt the power of that group hug just as clearly as I did.

Because really, there is nothing quite like a hug. Akin to the word ok—it doesn’t overpromise. Unlike a kiss, which suggests greater intimacy, a hug can happen anywhere, anytime, and between total strangers. And like ok–it can soothe, calm, provide momentary comfort.

Most importantly, it reaffirms our connection to others, reminding us that we are in fact not alone.

And that’s why it had to be a group hug. I got squeezed but I was squeezing back hard. I know I’m not the only one going through a tough time right now. Lung Cancer is a ruthless disease–those sucky survival stats are not just for show. And even though those of us with a targetable mutation have seen a dramatic increase in five year survival rates, it’s like playing poker. There are a limited number of cards in this deck and once they’ve all been dealt it’s a whole different game.

So, my tribe, my fellow travelers. Let’s hold each other tight.

And they call this coverage

$8.80 a puff

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.

Really kinda blows, doesn’t it.

Bitch is back

When I awakened yesterday morning my first thought was that I would be getting bad news at my scan review later that day. And then my second thought was that if I was truly experiencing progression, Alice was already both aware of and on it.

Two for two.

Like some pernicious weed, my cancer is cropping up again in the same exact spots it always does. Nothing drastic yet—interval thickening and slight increase in size—but the concerning part is how quickly I have become symptomatic. That and the fact that I have now acquired resistance to three ALK inhibitors, with lorlatinib being the biggest hammer in the tool box and supposedly covering most resistance mutations.

Slice of me

So I’m up a bit of a creek. Last night I got a text from my youngest in which he said he was so sorry and then ‘I’m scared.’ I wrote him back saying that I was also sorry and scared but that I was strong and Alice is smart and we will figure this thing out.

At the moment I am staying the course on lorlatinib. We did discuss going up in dose but Alice felt I would experience no true therapeutic advantage while increasing troublesome side effects.

I will scan again in eight weeks and Dr. Shaw is looking into whether it would be safe to perform a needle core biopsy. One area is too close to the diaphragm and the other is inconveniently located underneath my left breast. The last time I had a biopsy it was straight through my boob (as uncomfortable as it sounds).

Hopefully that will be possible though as it could help us figure out possible avenues. Discussed so far have been radiation on the area furthest from the diaphragm and a combo of lorlatinib and some other agent.

Mostly I am sad. Feeling fine (not so very long ago) was absolutely amazing. I’m on a roll with my art/writing/gym/dating and I realize this is going to put a major crimp in things. In short, logistically life is going to get a hell of lot harder and I’m not looking forward to it.

Per the bigger picture, I’m trying to keep my head from going there. Focusing on what’s right in front of me is going to help me maintain my cool and my courage. And I’m gonna need them both.

However, I’m not in this alone. The outpouring of messages after I made a post on Facebook confirming progression has been astounding. As I left my appointment yesterday Alice and her PA Jen Logan both hugged me hard. And then Jen looked me in the eye and said ‘We’re going to fight this together.’ I know she means it.

And the overcome

Because we all need a can-do story now and again.

So. If the part fourteen years have taught me anything, it’s how to power through. Not saying that such an approach is 100% effective but then again, sometimes scrappiness and un utter lack of hesitation is key.

My son Peter and I have our inside version of the joke is on the universe (not us). It goes like this: ‘It’s impossible, now let’s do it.’ Oh, and we have. Both alone and together.

A couple of prime examples. When I began my first clinical trial in October of 2008, I was three months into ‘you have three to five months left to live’. In other words, officially a dying woman. I also lived up past Lake Winnipesaukee in New Hampshire, a good two and one half hours from the hospital without traffic. I drove myself both to and from the hospital in the same day for all of my trial visits. And yes, I was married at the time and it wasn’t until much later that I would feel angry about the fact that I made those trips alone. However, more importantly, I did it. And, of note, I am no longer married ūüėČ

Getting Peter into private school was a monumental effort as well. I was going through chemo and I would lay on the couch as he wrote essays and then when I was feeling better, we would go on tours and interviews. When he got into Phillips Exeter Academy it was an immense sense of accomplishment. And when it was time for him to apply for college, we repeated this routine, as I would go and hang out in his room at PEA while he wrote, just to offer support. Of course, it was his own academic prowess that got him into MIT.

When I left my marriage, I was post chemo and pre lorlatinib, my health again failing. Some close friends helped me move the heavier items but I drove the 26 foot truck myself—a first. The day it was due to be returned I had one more load and a seemingly impossible deadline but I simply told myself that failure was not an option and I got the job done.

Of course, some situations truly would be impossible without assistance. I own a little airstream trailer, and the parking lot here at the lofts is being hot topped. That meant I had to move my trailer but when August and I tried to hook up the hitch, we discovered the mechanism was rusted into place. One of my neighbors suggested that if we got enough people, perhaps we could simply lift the the hitch onto the ball. So, the next day, we did just that. Six people lifted a 3500 pound trailer by the hitch, gently placing it on the ball of my truck as I deftly (yes, deftness was mandatory, failure not an option) inched it into place at just the right moment. Not probable, but possible.

When you can’t remember shit

L1110016

Perhaps the best greeting card ever.

First, a blanket apology to anyone whose birthday I have forgotten this year. Same goes for all those unanswered emails, texts, phone calls, missed appointments and other no-shows.

Once upon a time I and my ability to recollect were reliable. As a child, I possessed an eidetic memory and when I wished to retrieve an event it was almost as if I were watching a movie of the past in my brain. According to literature the ability to remember things in an almost photographic sense disappears in adulthood, but I am a highly visual person and always utilized a sort of Hansel and Gretel bread crumb approach; when trying to remember something I would visually retrace footsteps in my mind until I came back to the thing I was searching for.

That is, until I started my current therapy, lorlatinib. A small molecule designed specifically to cross the blood brain barrier, lorlatinib is able to deliver drug to tumors within the central nervous system. This is great news for individuals with brain mets but it also means that there may be accordant cognitive side effects. I started early in the trial during dose escalation and at a previously higher dose than I am now taking, and those cognitive side effects were so pronounced that a few weeks into the trial I felt as if I could no longer process or reason. Fortunately lowering my dose improved that scenario but I still felt as if my memory had been completely wiped and that I had suffered something akin to a brain injury.

Because I was also in the midst of a nasty divorce it was hard to parse the stress from the effects of therapy, but suffice it to say that life was challenging.

Two years out I am not only still alive, I feel almost as smart as I used to be. However, my memory is still completely shot. Add advancing age into the mix, and I think it’s fair to assume that I will continue to do things like purchase airline tickets to the wrong city (last summer) or for the wrong day (upcoming trip). It’s a little unnerving and yet you know I like to look on the bright side (cue Life of Brian). Historically I was a mental ruminator, and often made myself miserable by reviewing unpleasant situations over and over. Well guess what! Not being able to remember shit sometimes comes in handy, and I no longer dwell on much of anything.

Although my memory challenges make life less predictable, I am learning a lot about flexibility, personal forgiveness, and a whole lot of scrappy. In the case of the flight to the wrong city, I rented a car (first time ever, alone) and drove the additional 400 miles to my intended destination.

So even if I miss the boat entirely (wink wink–see above), I know I’ll still get there. I just might not remember how.

It was good while it lasted.

Stability, that is.

As any metastatic cancer patient understands only too well, what doesn’t kill you often just keeps trying.

I’ve been in this battle for so long now–more than eleven years–and most of that time has involved active combat with an ever advancing foe. But thanks to lorlatinib, my disease has been stable since June of 2014; my most sustained period of response yet. As a bonus, I’ve felt so damn good it’s been easy to imagine myself cancer free.

However, my scans have always told a slightly different story, with remaining nodules and opacities scattered here and there.

Lungs and Airways: The patient is status post left lower lobectomy for lung
cancer. There is a left lower lobe solid nodule on image 41 series 201 measuring
5 mm unchanged dating back to 5/14/2015. There is also subpleural patchy opacity in the left lower lobe image 63 series 201 that remains stable compared to 5/14/2015. There are small centrilobular groundglass nodules in the left lower lobe image 51 series 201 also stable compared to 5/14/2015 the largest of which measures 9 mm. There is a stable 2 mm right upper lobe nodule image 32 series 201. There is a stable subpleural groundglass nodule in the right upper lobe image 48 series 201 measuring 5 mm. A second groundglass right upper lobe nodule measuring 5 mm but is essentially unchanged from 12/10/2015 and 4/14/2016. A 4 mm solid nodule along the right minor fissure is stable. There are no new nodules. Pleura: There is a small left basilar postoperative pleural effusion that remains essentially stable.

The words unchanged and stable are absolutely key here.

However, on my scan report today it was noted that one nodule had in fact changed size: There is a 5mm nodule on image 52 that appears to have grown since 5/14/2015 when it measured 3 mm but is unchanged compared to 3/6/2016.

Obviously it had escaped the notice of previous radiologists. However, upon reading today’s report, my oncologist Dr. Shaw reviewed the scans and agreed that this particular nodule had in fact enlarged and likely represented progression.

Nothing to panic about but a potent reminder that shit is still real.

Dr. Shaw is already talking game plan. We will scan again in three months. If the nodule continues to grow, we might biopsy in an effort to determine what the mechanism of resistance is. If it can be identified, I might be a candidate for a combination therapy of ALK inhibitors. As this is a solitary nodule and in my right lung this time, surgery is a possibility. So is radiation.

Stability may have been rattled but I’ve still got options.

And honestly, that’s the most important thing.

About time

Sort of ridiculous, but my About on this site was some 4 1/2 years out of date. Whoa, good problem to have, rewriting Abouts. So, it’s been freshened up a bit. About time I might say. Little preview here (to save you from having to push that About button):

Time for a new About! The last one had me six and 1/2 years out from diagnosis, on crizotinib (Xalkori) and happily married. So much water under the bridge since then, my friends!

So, updated version. I was Linnea Duff, but I’ve been divorced since 9/1/15 and have reclaimed my birth name, Linnea Olson. I am now 56 flipping years old–old enough to qualify for a senior’s discount at Salvation Army and Saver’s thrift stores. And I couldn’t be happier. Old age is not a problem, it’s the goal!

Crizotinib bought me close to three years, but in the time since I spent 18 months on trial for ceritinib (Zykadia—where do they get these names?), returned to chemotherapy (carboplatin and pemetrexed), took a breather, returned to crizotinib and then in May of 2014, started my third phase I clinical trial for lorlatinib. Despite having acquired some secondary mutations along the way–S1206Y and G1202R–I have had both a positive and sustained response to my third ALK inhibitor.

In April, it will have been eleven years since I was diagnosed. My three kids are all adults now, at ages 31, 30 and 18. The youngest, who is in the college application process, wants to be a cancer researcher. Mama couldn’t be prouder.

And me? Living in a renovated mill in Lowell Massachusetts in a community of artists. I am once again a practicing artist and also sell vintage clothing on the side (The House of Redemption). I continue to devote a fair amount of time to lung cancer advocacy and in addition to my blog here, I write for CUREtoday.

Best news of all? I feel great, absolutely fabulous.

And I think I’ll hang onto the video—even though it is out of date. It just makes me SO happy.