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.
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.
Kumo and I just returned from our second walk today, during which I was taking my customary long strides and deep, deep breaths.
Two weeks ago this was not possible. My fitness had declined to the point that it was, frankly, becoming more difficult to move around.
My lungs have been through a hell of a lot. Not once, not twice—again and again over a period of sixteen plus years. And yet, given the opportunity, they are still capable of a good deal of bounce back. This is something I do not take for granted.
Three weeks ago I would have said that it was unlikely I’d be here for next Christmas. Now I am back to measuring time in years versus months.
Although I don’t have actual RECIST measurements back from the trial radiologist, I do have the assessment of my two oncologists. A “Wow, they do look great!” and a “‘Flipping amazing’ just about sums it up.” And then there was my friend Dr. Jack West’s comments from twitter, which I don’t imagine he would object to my sharing:
Yesterday was all about personal celebration, but today I thought about the greater impact. When I entered this trial, I was advised that the best response had been stability. Although that wasn’t going to be good enough, it was what I was going for. Today I confirmed with Dr. Lin that my scans likely represent between a 50% and 70% response. Which is a heck of a departure from stability. I also confirmed that up until yesterday, stability was still the best overall response.
Today I imagined researchers, other cancer patients, and even pharma execs doing the happy dance. This is so much more than a personal victory–a response of this magnitude represents capital H Hope.
So yeah, this a BFD. And I couldn’t be more pleased.
Alright. So I fantasized that my fever last week was burning out the cancer. I imagined it like toasting marshmallows, with that bad part of my lung just crisping away to ash.
WELL, ladies and gentleman, boys and girls, have I got some news for you. I had a scan this morning and it shows fucking reduction! Never, ever, did I expect to see this kind of positive response at this particular juncture. As I read it (the first time!) I even thought for a moment that perhaps it was a mistake–someone else’s radiology report. But no, that’s my cancer they are describing and it is GETTING SMALLER!
Thus far I would characterize my first several weeks on the binimetinib plus lorlatinib trial as somewhat eventful.
There was that brief episode that led to a few days in the hospital, likely not directly related.
Then the host of new and old side effects. Painful neuropathy (nails and screws is how I refer to it) that is part and parcel of lorlatinib, as well as this perpetual sensation that I am trembling. And the slowed speech–once again, my speaking voiced has the cadence of John Wayne. These are things I am familiar with as I spent more than five years on lorlatinib.
The new side effects are more troubling. Mucositis again—this time the major issue is ulcers on my tongue. Hurt like the devil. Splitting of my finger tips–at one point I had eight different open cuts. They are extremely painful and of course make doing even the simplest of tasks difficult. Retinopathy and dry eyes. The first is mild and simply must be monitored but the dry eyes necessitate the use of drops several times a day and an ointment at night. And then, joy, oh joy, pustular acne. I was advised that the moment it started, I should begin using a particular antibiotic ointment. However, it took two weeks to be approved by my insurance. This really pissed me off. If there is a known side effect to an experimental therapeutic and only one antidote, it should be automatically provided and or covered by the trial sponsor. I finally started on the ointment yesterday, but my face is now covered in small lesions.
And then there are the more serious side effects; I have now had two grade three adverses events. First, the elevated creatine kinase. I had to come off binimetinib and there was a question as to whether or not I would be allowed back on trial and if so, if it would be necessary to reduce dose. Fortunately I am back on and at my previous dose. However, my levels are yet elevated–now grade two.
I am pushing fluids and also have to be very careful about lifting and vigorous exercise; I can’t even use a ten pound free weight. This is frustrating but I am taking it all very seriously as severely elevated creatine can result in both kidney failure and muscle death. No fun.
On Monday I learned that my cholesterol is elevated to the degree that protocol requires me to stop lorlatinib until I am back within grade two range. Elevated cholesterol is a known side effect of lorlatinib and I had been on a statin since I started that trial in 2014. However, once my creatinine became elevated I stopped the statin. Now the cholesterol is a bigger issue than the creatinine so I am back on the statin.
What a circus. Last night I was thinking about the irony that I am dealing with this crazy range of side effects to treat tumors that are just in my lungs.
I find myself wistful for the days of targeted therapy and even traditional chemo. In three weeks I shall have my first scans and a better understanding as to whether or not this is all worth it. In the meantime, my mantra remains eyes on the prize. I will see 2021. And, hopefully, the emergence of other potential therapies.
Ones that don’t have pustular acne as a side effect.
S’alrighty, I got the go ahead to take binimetinib, and (better yet) at the same dose as before. This is good news as my elevated creatine kinase represented a Grade 2 adverse event, in the parlance of trials. There was a distinct possibility that my dose would have been reduced or even that I would have been disqualified from the trial. Just another garden variety close call.
My eyes checked out ok today as well. My biggest issue per vision is not the (mild) retinopathy, but rather the fact that my eyes are so friggin dry. Like the inside of my mouth and the tips of my fingers. Even the acne that I may develop as a side effect is related to dryness. Lubricate, lubricate, lubricate!
Tomorrow is going to be a long day of pharmacokinetics, but I shall be happy to be there. Hopefully from this point forward side effects will be manageable and better yet, maybe I’ll have some response.
In the meantime, I just ordered some condoms or finger sleeves. Party!
I am watching the Queen’s Gambit on Netflix. Although not a fan of board games (Scrabble aside), I love me a scrappy protagonist. Female, better yet.
This might be the time to mention that I possess confidence. Extraordinary confidence. Not that I shall win, but rather that I have the ability to lose and lose again. And still want to keep playing.
To me, that is by far the most accurate definition of self assuredness. Whatever comes, I can and will handle it.
When I was first diagnosed with lung cancer, I looked at those five year statistics for any stage (14% in 2005) and I said to myself, this is going to be hard, but I can do this.
I based my self assessment on a realistic understanding of my strong points. I had never been the fastest, the strongest, or the smartest. Certainly not the luckiest. But I had a wicked strong streak of stamina. Knock me down and I’ll come right back for more.
Damned if it isn’t one handy quality to be in possession of. As of late my perspective has often been from the ground up. My labs today showed an elevation of Creatine Kinase, and my thighs were hurting—something I attributed to yesterday’s hike on the beach. However, it can also be an indicator of Rhabdomyolysis, which can happen both as a side effect of statin use (high cholesterol is secondary to lorlatinib) and binimetinib. My trend is yet mild (400) but they take this shit seriously, so for the moment I am holding both binimetinib and atorvastin. Tomorrow I have a crown replaced where I have developed a cavity, secondary to mucositis due to my previous therapy. And on Wednesday, I get to spend several hours with an ophthalmologist as I have also developed a mild case of retinopathy, a possible side effect of binimetinib.
In addition, I shall get labs again on Wednesday and if my CK levels are within normal, I am back on binimetinib with a long day of pharmacokinetics at MGH on Thursday and then back again for bloodwork on Friday.
What with all this time devoted to cancer, I hardly have time to be an artist.
I am only sort of joking. Again, this is why I feel participants in clinical trials should be compensated. Enrolling in a trial is often akin to a full time job.
Let’s just hope all this effort achieves its goal—keeping me around so that I can devote time to higher pursuits. Like art. And life.
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.