Tag Archives: progression

And here we go

Posted on May 25, 2021 | 6 comments

I had a scan on Sunday and the report was just posted. From a personal perspective, I would have to say it is not good news. Rather aggressive growth over a two month period.

So damn.

I am not surprised. My body and I have a rather tacit understanding. And what I have been hearing has been progression.

On Thursday I shall meet with both Jessica Lin and Alice Shaw. We shall go over the scans but also discuss the possibility of a biopsy–something I am requesting. The hackathon has been going strong and several offers have come in for further genetic testing and maybe even an attempt at creating a mouse model–if tissue is available.

As my tumor burden has increased somewhat significantly, I would say the answer is probably yes. However there is still the question of location, location–is it accessible.

Thursday can’t come fast enough as I shall feel more comfortable with some answers as to what direction we will be heading. The one thing I can say with assurance is onward. This party’s not over.

CT Chest – Details

TECHNIQUE: Diagnostic CT CHEST WITH CONTRAST

COMPARISON: Prior exams, most recently a chest CT from 3/5/2021.

FINDINGS:

Lines/tubes: None.

Lungs and Airways: There is biapical pleural scarring with increase in the adjacent pleural fluid at the left lung apex. Again demonstrated are postoperative changes status post left lower lobectomy. Within the inferior aspect of the left upper lobe there is parenchymal consolidation which has increased from prior. Inferiorly and anteriorly, consolidation measures approximately 8.2 x 5.1 cm on image 364 series 4, increased from 4.2 x 5.1 cm as measured in the same fashion on chest CT from 3/5/2021. This consolidation extends anteriorly and inferiorly with increase in the subpleural nodularity which now measures 41 mm in length as on image 303 of series 4, previously approximately 37 mm with increase in the adjacent consolidation and groundglass opacity. There is increasing consolidation which extends inferiorly as well, now measuring approximately 5.9 x 4.9 cm in image 4 4 of series 4, increased from 2.9 x 2.0 cm as measured at the same level on prior exam. There is intralobular septal thickening as in image 360 of series 4 which lymphangitic spread of tumor cannot be excluded. There is increase in the adjacent loculated left pleural fluid. A right upper lobe pulmonary nodule measures 6 mm on image 251 of series 4, not significantly changed when compared back to at least 1/5/2021. There is adjacent reticular opacity consistent with scarring. Mild nodularity along the right minor fissure measuring up to 5 mm on image 268 of series 4 is stable when compared to 1/5/2021 and likely represents a fissural lymph node. Other small nodules along the right major fissure are stable. There is a 3 mm nodule in the right upper lobe on image 148 of series 4, stable back to 1/5/2021. No new or enlarging right-sided nodules are seen. There is reticular opacity in the right lower lobe with associated subpleural bands, stable from prior and likely due to atelectasis/scarring. The central airways remain patent.

Pleura: There is a small left pleural effusion with loculation which has increased at the left lung apex. Left basilar loculated pleural fluid has also mildly increased when compared to 3/5/2021. There is no right pleural effusion. There is no pneumothorax.

IMPRESSION: 

1. Status post left lower lobectomy with continued increase in consolidation within the inferior left upper lobe when compared to 3/5/2021 highly suspicious for progression of known malignancy. There is adjacent interlobular septal thickening for which lymphangitic spread of tumor cannot be excluded.

2. Mild increase in volume of loculated left pleural fluid superiorly and inferiorly when compared to 3/5/2021.

3. No significant change in scattered right pulmonary nodules measuring up to 6 mm. No new or enlarging right-sided nodules are seen.

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Game plan

Posted on October 29, 2020 | 4 comments

My sense of where I am at and my scans are in agreement. And although I can continue to entertain the notion of free choice, Dr. Lin said today we were coming to that place where a switch in treatment is likely indicated.

First, the radiology report:

FINDINGS:

Lungs and Airways: There has been a prior LEFT lower lobectomy. Again noted are multiple peripheral nodules in the LEFT upper lobe the largest of which measures 1.5 x 1.3 cm on image 157 series, 4 unchanged from 9/15/2020, but increased from 8/3/2020 when it measured 1 cm. Other LEFT upper lobe nodules are stable in size and number. There is some persistent patchy enhancing 3 x 5.1 cm masslike opacification in the LEFT upper lobe image 245 series 4 that is also stable compared to the prior exam but slightly larger compared to 8/3/2020 when it measured 1.7 x 4.8 cm. While this may represent increased atelectasis, progression in consolidative tumor also possible.

There are multiple stable peripheral nodules in the RIGHT upper lobe and along the minor fissure. The nodule along the minor fissure measures 8 mm image 160 series 4. No right-sided new nodules are noted. No new nodules are noted. Airways are patent.

Pleura: There is a persistent loculated pleural effusion with increased loculation superiorly and posteriorly.

Of greatest concern is the (currently stable) spread to my right lung, the increased loculation of the pleural effusion, either greater consolidation of my largest (3 x 5.1 cm) mass or increased atelectasis, and the fact that one of the nodules in my upper left lobe has increased in size to 1.5 x1.3 cm from 1 cm when I was scanned on 8/3/20. Not rapid growth but also not slow.

The plan is to infuse DS-1062a one more time today. Scan in five weeks and revisit a decision then. The assumption is that I would start on a trial of binimetinib (a MEK inhibitor) and lorlatinib (ClinicalTrials.gov NCT04292119), but once the SHP2 plus lorlatinib trial becomes available, make a switch. Tell you what, I’m going to get a belt dedicated to trial participation, and start making notches on it.

So there you have it. No angst about throwing away a realistic option as my continuing progression concurs with my personal assessment. I asked about the side effect profiles of both binimetinib and SHP2 and am encouraged. First, they are oral medications (no more chemo!) and, as petty and paltry as this might sound, there is no hair loss. Goodbye buzz cut, hello curls, eyebrows, and eyelashes. Adios mouth sores. Hello my old friends diarrhea and constipation (manageable).

Of course, a new trial means more biopsies and initially more frequent visits. I’m down with that too.

Looking forward to a fresh start. I’ve got places to go and people to do! Kidding. I mean yes, once upon a time. But pandemic et al, you do you and I’ll do me 😉

But once I start feeling better (a forgone conclusion) and I’ve got my blond locks back, I’ll be back in the game.

xo

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Coming clean

Posted on September 5, 2020 | 3 comments

I’ve got no eyelashes. Not a single one. And my eyebrows remind me of those scraggly hairs my adolescent sons would so proudly sport on their upper lip–which I referred to (and not kindly) as a pornstache.

I also noticed yesterday that the sides of my head are looking a little thread-bare. Like a newborn, my soft fuzz rubs off on my pillow when I’m sleeping.

So, it’s gotta go. I’ll be shaving my head after breakfast because when it comes to hair, I am all or nothing.

It is a tad disappointing–I was pretty jazzed about the new growth. However, with the last two cycles three weeks apart, I am experiencing the side effects of treatment yet again.

My first four days post infusion I was butt-kicked. Zero energy. The mouth sores are back as well, albeit a milder version than before.

Of greater note, I’ve noticed a familiar wheeze in my left lobe. Side effects plus efficacy is an acceptable trade-off. However, there is absolutely no point in going through this shit if my cancer’s not taking a similar beating.

I will be scanned on the 15th which shall confirm or deny my suppositions. Preemptively, I have alerted my oncologist and gone so far as to suggest that if there is not an obvious next step, a break might be in order.

When I look back over the past seven months, it as if I have been trying to get somewhere in a leaky canoe. In between paddling, I’ve been frantically bailing. The good news is, I’m still afloat. And should all else fail, well, I’ll jump overboard and swim to shore.

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Scaling

Posted on December 13, 2019 | 10 comments

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

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Oh girl

Posted on December 6, 2019 | 10 comments

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.

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Climbing trees

Posted on October 1, 2019 | 7 comments

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.

xo

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And they call this coverage

Posted on November 14, 2018 | 38 comments

$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.

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Update

Posted on April 29, 2014 | 16 comments

I had my CT scan and appointment with Dr. Shaw yesterday. As anticipated, the news is not particularly good. The radiology report reads: ‘A mixed attenuation lesion in the left lower lung zone now measures 8.4 cm, previously 6.9 cm. There are also increased small ground glass nodules adjacent to the lesion. The central solid portion of the lesion now measures 6.2 cm, previously 4.4 cm. A mixed attenuation lesion in the anterior right upper lobe now measures 1.4 cm, previously 1.4 cm. Another right upper lobe lesion now measures 7 mm, previously 4 mm. Inferior right upper lobe mixed attenuation nodule measures 1.5 cm, previously 1.2 cm—Interval increase in size of dominant mixed attenuation lesion in the left lower lung zone and some of the right upper lobe nodules consistent with worsening lung cancer.‘

Still, were I not symptomatic, Dr. Shaw would consider leaving me on Xalkori for a little longer. However, upon examination she noted how very wheezy I am and we both agreed that it is time to try something else.

Two weeks ago I realized (with no small degree of horror) that I had gotten mixed up on my medication and had been taking my Xalkori only once a day. At most I made this mistake for two or possibly three weeks but I was absolutely mortified when I reported my discovery to Alice (Dr. Shaw). Hopefully it had no major impact upon my response, as my symptoms had never abated. However, it is a potent reminder that I have been terribly distracted. As Alice remarked, I have a lot on my plate.

I am to start the new trial on the 13th of May. We have a scheduled mediation for our impending divorce on the 16th and my first impulse was to push back the trial date. Last night I did a lot of soul searching and realized that I need to get my priorities straight (the mediation can wait if necessary).

In addition to my own worries, Pete is experiencing some challenges (kid can’t get up in the morning) and I’ve been back and forth to Exeter a number of times. Desperate times call for desperate measures, and I am setting my alarm for 7:20 every morning so that I can place a rise and shine call to my sleepy son. Yesterday I had to call repeatedly; today he picked up on the fourth ring.

I confess to feeling somewhat overwhelmed. However, my internal dialogue moves quickly from wallow to wonder; I am still here.

Live, love, life.

 

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Flights of fancy

Posted on September 16, 2012 | 28 comments

This slideshow requires JavaScript.

And leaps of imagination. These are some of my favorite images from the shoot last week with my friend Sadie Dayton. Our day began early; we were on the beach at sunrise. Sporting at various times a bird mask, vintage silk lingerie, satin slippers, fishnet stockings, and Peter’s great grandfather’s dress tails, I frolicked in the early morning light as Sadie shot frame after frame.

We, Sadie and I, have always seen the best in each other. In some ways, she is like the twin I longed for as a child (oh–the trouble we could have gotten into!). Our mutual understanding and trust runs deep: in her presence, I am completely comfortable and free from inhibition.

When asked to take these pictures, Sadie said yes without hesitation. She understood the sense of urgency; my need to see just exactly where I am, right now.

Standing on terra firma, with spirit intact.

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Results

Posted on May 22, 2012 | 29 comments

I thank each and every one of you for the comments as well as the messages I received. My appointment yesterday was late in the day, and after arriving home around seven, I had a cup of tea and opened some emails. Too tapped out to write, I drew a hot bath and then went straight to bed.

David was out of the house early, so after driving Peter to school, I sat down at the computer and thought I better get a blog up. Alice called (bless her) with some measurements and clarification and then I decided that what I really wanted to do was go back to bed. And I did.

Morning naps are the best. I awakened rested and with that pleasant sense of momentary disorientation…still a bit tangled in the brief dreams I’d just had and totally free of yesterday’s worries.

So. The reports from the scan are not a catastrophe. What was characterized in the previous scan as ‘These findings may represent mild increase in minimally invasive adenocarcinoma‘ is now ‘Increasing round glass opacities in the lateral portion of the left lower lobe and slight interval enlargement of a nodule adjacent to the right minor fissure are suspicious for progressive lung cancer.‘

Simply put, it is clear that I am developing resistance to LDK378. My cancer, that tricky devil, has figured out a way around yet another therapy.  The largest single lesion, which is actually a patchy ground glass opacity, measured 2.5 cm at its longest point on 2/21/12 and was stable from previous reports. On 4/03/12, there was a slight increase to 2.8 cm. The latest report, dated 5/15/12, notes an increase to 3.5 cm.

Clinical trials utilize a tricky algorithm called RECIST to measure response. The technique is planar, rather than volumetric and is based on averages from several target lesions. BAC, which is characterized by hazy infiltrates rather than clearly delineated solid tumors, is not given to easy quantification.

As Alice explained this morning, for the purpose of the clinical trial, my tumors are only minimally increased in size. This is important, because after a certain degree of progression has occurred, a participant will likely be asked to leave the trial.

That’s the good news. The bad news is that the cows are out of the barn and although not yet stampeding, they are getting mighty restless.

So what’s next? Stay the course for the moment. Inquire as to whether or not Novartis would grant permission to return to a dose of 500 mg LDK once again; albeit with careful monitoring of liver enzymes. Monitor my physical symptoms closely; there is in fact a bit of wheezing in both lungs now.

We will also watch that 6 mm spot in my right lung with interest; perhaps it might become a candidate for biopsy whereas the ground glass opacities are fairly useless in that respect. A curious aspect of this particular recurrence is that although the cancer is cropping up in pretty much the same spot it has before, the appearance is slightly different; more haze and less opacity. And that 6 mm nodule appears to be an entirely different beast altogether, prompting me to ask Alice if it is possible that these two separate areas of apparent progression might be driven by individual (and newly acquired) mutations, each conferring their own mode of resistance. Intriguingly, but damnably frustrating as well, the answer is yes, that is possible.

In conclusion, I started on LDK back in September of 2011. Nine months and counting for an experimental cancer treatment is really quite good, and I knew when I signed on, that this would be a temporary fix. I hope to squeeze another few months out of it but if that’s not possible, there are options. Which in itself, is an amazing thing.

I told Alice yesterday that I’m planning on attending Peter’s graduation from high school. That will be three years from now. She thinks it could be doable.

That’s all I need to hear.

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