Tag Archives: lorlatinib and binimetinib

Home sweet home

My little adventure is drawing to a close. As soon as they get a read on last night’s brain MRI, I should be free to leave (just came in, all clear!).

In the world of healthcare, unremarkable is the most remarkable finding of all. And thus far results have been, as one practitioner put it ‘stone cold normal.’

The only diagnosis thus far was almost incidental. I reported some visual changes and so was seen by an ophthalmologist. I have exceptionally dry eyes (a side effect of my previous therapy) and some central serous chorioretinopathy, a potential side effect of binimetinib. Generally it resolves on its own but I will be followed by a retinal specialist as well. I shall also be wearing a portable heart monitor for two weeks, just on the off chance this was a cardiac event.

I also got the go ahead to drive myself back home. Sooooooo relieved. I am loathe to let go of any of my independence. In fact, yesterday I had to wait more than an hour for transport to come pick me up at Mass Eye and Ear. I asked a nurse if I could just walk back to Ellison and she took one look at me (in my johnnie and down jacket) and said ‘You’re not walking anywhere.’ My first thought was does she know who she’s talking to?—not in a I’m a celebrity sort of way but rather nobody tells me I can’t walk. Nobody. I had my car keys in the pocket of my jacket and for a fleeting moment I was tempted to stand up, walk out and drive straight home. Live free or die, y’all.

I calmed down. Transport came. I had chocolate ice cream for dessert. And today, I AM GOING HOME.

xo

‘I’ll have a side of this…’

Not all side effects are bad ones. Lorlatinib has two that I rather enjoy. Vivid dreams (epic too, I swear I sometimes pick up where I left off the next night) and a surfeit of energy. Good energy, not the jittery heart racing stuff that comes from too much caffeine or (ahem) snorting coke. Or the rage-y artificial high that is secondary to steroids.

This is more akin to the way you feel after a sound night’s sleep. Well rested. Fresh. Ready to seize the day.

I’ll take it. My last therapy was a real buzz kill when it came to energy. And I am energy dependent. Lying around is so not my jam.

Plans, I’ve got big plans. That has always been my MO. And for the last few weeks I have been accomplishing the bare minimum. Tomorrow I am heading to the studio and I could not be more excited. Gonna climb those 94 steps if it kills me. And when I get to the top, art will be made.

xo

Down the hatch

The deed is done; I’ve had my first dose of both lorlatinib and binimetinib. It was all rather anticlimactic, this fifth trial. Sweet, (got two of my favorite nurses back on board), short and efficient.

Afterward I dropped the cake and birthday presents off to my eldest. We air hugged and I hit the road. Forty five minutes later a quick walk for Kumo, then I stripped off the clothes I wore to the hospital and showered (the ritual), and now I’m enjoying a piece of cake for lunch (Happy Birthday Jemesii!).

In a moment I’m crawling into bed with my heating pad. Hopefully I’ll have a nice nap but not before reciting some magic cancer killing incantations. We’ve got work to do, my body and I. Best get right to it.

Role reversal

Just another evening in paradise. Baking a cake, because tomorrow is my daughter Jemesii’s thirty sixth birthday.

Also memorizing my lines (Evalynn Linnea Olson, 11/26/1959) for my debut in yet another trial. Crack o dawn and I’ll be on the road to Boston and my lead in dose.

I’m preparing mentally for the rigors of this new role. A host of side effects with the most common being:

increase in cholesterol and triglycerides which can increase your chance of heart disease and stroke

damage to nerves in arms, legs, feet or hands causing tingling or numbness

slowing of speech

vision changes

fatigue

rash, acne, or skin irritation including redness, raised bumps, dryness or itching

swell or fluid retention in the abdomen, arms, legs, hands, feet, face, or eyes

muscles spasms, muscle pain, or inflammation

nausea

diarrhea

Some of this is old news to me, as I spent more than five years on lorlatinib. The zits are something I’ve not experienced since my brief tenure on tarceva in 2008. I am relieved that my hair is growing back. Better not to be bald and broken out. Whoopee!–In a deal with the devil sort of way. Signing on for whatever may come because I love life so fucking much.

There is no poetic justice here. Just a strong stomach for discomfort and an even stronger will to live.

Bring it.

The horses are out of the barn

The decision to start the new trial in a week was a good one. Results from my scan on 11/6 show growth compared to the scan on 10/26.

Increased size of left upper lobe masslike consolidation now measuring 42 x 17 mm, previously measured 38 x 14 mm. There are multiple solid and part solid nodules in the left upper lobe, some of which have increased in size for example a 7 mm nodule (series 6, image 230), previously 5 mm, and 11 mm nodule (series 6, image 187) previously 8 mm.

I have known since my first biopsy post progression that the histology of my cancer had changed to one that was more aggressive. This is the first time I have experienced such rapid growth though.

One week from today, on what happens to be my daughter’s thirty-sixth birthday, I shall take my lead in dose of lorlatinib and binimetinib.

In the meantime, I ask for your good thoughts/prayers/sorcery—all appreciated. I need to hit this shit with everything I’ve got.

xo

Here we go

Let me begin by stating how fortunate I am to have access to incredible care.

I had a chest x-ray and labs in Boston today. My bloodwork was good and the x-ray noted alectasis, but that was also called out in last week’s CT scan and there was no notable difference.

When Dr. Lin came in to see me we talked about my fainting episode, general underlying crummy feeling, and the increasing pain in my left shoulder. Part of my malaise is likely attributable to a sinus infection, so I am starting antibiotics tonight. The fainting is not easily explained–I had an EKG and it was normal. I had another episode of lightheadedness this morning while lying down, so she doesn’t feel it is syncope. It’s now been almost a year since I’ve had a brain MRI so I will get one next week.

As for the shoulder, unfortunately it is likely related to the cancer in my left lobe. And the only real way to address it is to see if we can arrest the malignancy. To this end, she said she felt that waiting another month to start the next clinical trial might be too long.

The trial we had talked about—lorlatinib plus binimetinib–had a slot open yesterday and my fast thinking oncologist grabbed it for me. I signed the protocol today, and next week prescreening will start. Her intent is that I shall start the trial the following week–my fifth phase I trial (this is IB–dose escalation phase).

I asked her if she thought there was yet any real chance of reversing the course of my cancer. She said yes. She also asked if I would be willing to try other chemotherapies. My response was affirmative, but I also told her that if it got to the point where further treatment was likely fruitless, I wanted her to be totally honest with me. She assured me that she would and also reminded me that at any time, I can decide that enough is enough.

On the ride home my mind was remarkably clear. I was jonesing for some potato soup—something I hadn’t made in years. And then–oddly, cornflakes. Another sentimental selection.

So yeah. Almost sixteen years in and this shit doesn’t get any easier. But–and this is wildly important–there are still options. And options represent hope.

And the goddess concurs

Alice called me today and we went over my scan report as well as my visit with Jessica Lin yesterday.

She is on board with a repeat scan in five weeks and then, almost certainly, a switch in treatment. Binimetinib plus lorlatinib is finishing up phase I so I would be entering at either phase IB or II. Most importantly, it will not preclude me from entrance into the SHP2 plus lorlatinib trial when that begins enrolling.

Her final assessment is that DS-1062a likely slowed down the pace of my cancer. However, given both the difficult side effects and the modest response, she agreed that it makes sense to give something else a go.

Not gonna lie, it’s always a bit scary moving from one treatment to another. And even though I am more than ready, progression is never a good thing.

Today I am totally wiped out but have also been wrapping my head around what is next. Back into the unknown. However, from this moment forward, I am focusing on recovering from yesterday’s infusion. Which is a postive.

Kumo is with his goddess, Susan. She spoiled him with long walks and a roasted turkey breast for dinner. I have been in my pajamas all day long–a rare but much appreciated luxury. My friend Diane came by briefly after her own scans the day before yesterday, and she dropped off a salmon filet which I finished this evening.

Thank the universe for good friends, stellar oncologists, and options.

xo

Game plan

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

Well damn.

I was certain this scan was going to show improvement. Yeah, based on my symptoms (no cough, only a teensy little wheeze) that I was responding.

Sigh. Dr. Lin called today after reviewing the scans and she feels that overall there may be some stability. But that there are some small spots that actually seem to be larger.

Not the news I wanted considering the side effects of treatment. My mucositis refuses to stand down even with the addition of morphine (not a mouthwash as I had originally thought, but an elixir). At the moment I have one very large sore under the right side of my tongue and four smaller ones on the left. Eating is a formidable challenge and I have lost about ten pounds since starting the trial. So we are going to delay infusion by a week.

Of course I asked about other options, given the lackluster response. We could return to the previous plan, lorlatinib plus a MEK inhibitor. That trial has yet to open but rumor has it it still will and soon.

So I guess DS-1062a might not be the drug for me. Again, damn.

In the meantime all I can do is keep trudging forward while trying to keep it all together. Physically, emotionally, spiritually.

This is tough–really tough.