Category Archives: Uncategorized

Getting crowded in here

You are not incorrect. There was a post up for less than 24 hours. I pulled it at the request of a beloved and if you were paying attention, not who you are thinking. C’est la vie.

First do no harm. In succinct summary, I had a no good very bad week. I also had a successful (as in, tissue was able to be harvested) biopsy and the following day, began my 6th phase I trial—lorlatinib plus TNO-155.

Initially it was all completely noneventful. Vomiting, diarrhea—garden variety and managed. But I was also dealing with increasing pain (possibly the tumor pressing on nerves) and shortness of breath. By week two the shortness of breath could be pretty profound and I was also experiencing night sweats. By the time I had my end of cycle appointment last Thursday, I was feeling really, really bad.

The technician who took my physical intake asked if I was ok–‘your blood pressure and heart rate are through the roof.’ My labs were not alarming but Jess did feel I might be dehydrated. I told her I felt I was experiencing a pleural effusion. And perhaps an underlying infection–those night sweats. In short I believed my body to be under a great deal of stress–that I was in trouble.

We agreed that I would get IV fluids, hold the drug and move up my scan.

First the chest Xray. My right, healthier lung is on the left–dark, as it should be. My left lung has been subsumed. This is only echoed by the CT scan. Airspace on the right–hard put to find any on the left.

There was a pretty clear reason for my misery and steps that could be taken to alleviate it.

A Thoracentesis was scheduled for the next morning. I was going to finish up with infusion around dinner time and then it would be long drive home in rush hour. While feeling like shit. ‘No way’ are you going home, said my friend Diane. I brought it up with the infusion nurse who said being admitted to the hospital was not a matter of convenience. Sigh. Stage IV lung cancer, major pleural effusion, pneumonia, and I have to explain to someone that a night in the hospital would not be about convenience. I live alone, live more than an hour distant, and I am sick as a fucking dog.

Advocate, Linnea. Explain to others what you really need.

Jess Lin called me and that was enough of a nudge. I asked if I could be admitted for the night. She hesitated for a moment (I mean, everyone is accustomed now to me driving back and forth) but then said sure, she would see what she could do.

Turns out there is a pilot program, just a week old, for a transitional Emergency room/ICU affair–kind of a hybrid. Low frills but a warm bed and all the attention I required. I was their patient 🙂

Yesterday morning I lay with my head in my arms as 1.5 liters of claret colored fluid was drained from my left lung. When I started to cramp, the surgeon stopped siphoning. A subsequent x-ray showed pneumonia and a moderate plueral effusion–there will be a redux.

In the meantime, relief was immediate. Excruciating pain became mere discomfort and I was no longer panting for each breath.

The irony? It is highly likely the pleural effusion is a side effect of TNO-155–an extreme form of fluid retention.

I am on two different oral antibiotics now and next Thursday we shall scan again. It the effusion is out of control, we will deal with that. If it has subsided to any degree, we might be able to assess my cancer, and to make a decision as to whether it is worth risking another round.

Hopefully the pneumonia will begin responding as well.

In the meantime this battered body of mine is resting. A lot.

PS: My friend Diane and my friend Melinda started texting each other. And Diane told Melinda that she tracks me on a find your friend app. Which, of course, Melinda wants in on now too. Two of my many angels, joining forces, on my behalf.

xo

Stolen

My niece Brandi kindly brought this to my attention: two different instagram accounts are pretending to have a relationship with me in order to shill t-shirts. Like I have time for a stolen identity right now.

Brandi reported both accounts to Instagram but they were not removed. I have reported them to Instagram as well. In the meantime, these are the fraudulent accounts which are pretending to have some connection to me. I have no association whatsoever with this scam and am appalled that someone would traffic on a cancer diagnosis. And, for all I know, there are more out there. Not me’s.

Johnny up and biopsy is a go

CT BIOPSY LUNG (LEFT) – Details

TECHNIQUE: Diagnostic CT BIOPSY LUNG (LEFT)

INDICATION: Metastatic lung cancer

Consent: The nature of the procedure, including its risks, benefits and alternatives was explained to the patient who understood and gave consent.

TECHNIQUE: 

The patient was placed prone on the CT table. Targeted preprocedure CT images demonstrated a dominant left lower lung mass, not significantly changed compared to chest CT from 5/23/2021. This was identified as the biopsy target.

After identifying a direct path to the target, the overlying skin was prepped and draped in the usual sterile fashion. A “time-out” was performed prior to initiation of the procedure to reconfirm the patient’s name, date of birth, and site of procedure. 15 cc of 1% lidocaine were administered for local anesthesia.

Using CT guidance, a 19-gauge introducer needle was percutaneously placed in the target using posterior approach. The stylet was exchanged for a 22-gauge Chiba needle and aspirates were obtained for slides. Additional fine needle aspirates were collected in a vial filled with normal saline. Subsequently, multiple tissue cores were obtained using a 20-gauge spring-loaded device. Tissue samples were handed to the cytopathology technologist and research assistant.

Post procedure images demonstrated no significant hemorrhage or pneumothorax.

ANESTHESIA: Intravenous conscious sedation was administered by radiology nursing. Continuous hemodynamic and respiratory monitoring was performed, including the use of pulse oximetry.

START TIME: 8:15 AM

STOP TIME: 9:03 AM 

Medications: As per medication administration record

CONDITION/COMPLICATIONS: The patient was brought to the radiology recovery room. Post procedure chest radiographs were obtained one hour and three hours after the procedure.

DISPOSITION: Oral and written post-procedure instructions were given.

IMPRESSION: 

Needle aspiration and core biopsy of left lung mass without immediate complications.

TNO155 and lorlatinib

I posted this on Facebook yesterday: How to explain that you feel extraordinarily fortunate (6th phase I clinical trial) while also feeling incredibly fucked (6th phase I clinical trial). There are no words.

But I shall make an attempt. First, a description of NCT04292119 from My Cancer Genome.

Secondly, the transcript of an interview (conducted by ALK Positive, who also provided funding for this research study) with my oncologist Dr. Jessica Lin as well as Dr. Ibiayi Dagogo-Jack–the Principal Investigator for this trial.

Not gonna lie, my chill facade crumbled yesterday as my anxiety went through the roof. I had labs–‘skidding into scar tissue’ was the explanation the phlebotomist gave as she poked me for the second time, and a brain MRI, and as I lay in the scanner I had to laugh (so as not to cry). There is little less soothing to frazzled nerves than the percussive cacophony of a brain MRI.

I’m feeling a little calmer again today. And super hopeful that the fact I responded to MEK inhibition combined with lorlatinib may make me more likely to also respond to SHP2 inhibition.

What I’m not looking forward to are the side effects.

C’est la vie.

I am absolutely clear as to what my goals are. As evidenced by a text discussion with Alice per the possibility of removal of what’s left of my left lung (an avenue I am also exploring). Neither of my oncologists are fans, and as Alice explained, she was concerned both about my ability to tolerate a pneumonectomy as well as the negative impact on both short and long term quality of life. My response? ‘Yes–understood. But I am also facing death–impossible to recover from. No reported QOL.’

La vie. Mine. Which I am enormously attached to. And therefore will do almost anything to hang onto.

Update

That’s my optic nerve—left and right eye.

So, I’ve been busy jumping through hoops. Consent form signed. Labs taken. EKG and ECHOcardiogram performed. Eyes examined–that was a big if–but my retinas look good. All that is left is a brain MRI–which should not pose any issues.

A week from today I shall have my biopsy. The following day, I am to start the trial for Lorlatinib in combination with TNO155–a SHP2 inhibitor.

Had I not been to this particular rodeo so many times before I might be anxious. Or maybe a little bit excited. I am neither. What I am is tired. But also hopeful.

Always hopeful.

xo

Where have all the rabbits gone

There were some major highlights to today. A quick meet-up with Patty Watkins (and a photo-op with the white ribbon she brought me). Hugs from not one but both of my oncologists. Lunch with one of them (Alice) and coffee afterward with Brad Power, who is hosting the Linnea Olson hackathon. Brad and I had not met outside of zoom, and we were each surprised by how tall the other was (we’re all small online).

Less festive was the stark reality of where I’m at. In short, it’s getting increasingly less likely that any rabbits will be pulled out of hats.

On a plus side, that biospy is an enthusiastic go, as there is plenty of tumor to harvest now. By the end of next week or, at the latest, early the following week, I shall be back on the table.

I also signed a new protocol today, for the lorlatinib/TNO155 trial. TNO155 is a SHP2 inhibitor and paired with lorlatinib there may be a synergistic/anti tumor effect. It is very early in a phase I trial (I shall be the second participant at MGH). And, occular toxicity is a potential side effect. Given the blisters on my retinas while on binimetinib and lorlatinib, I could have been precluded but permission was given as long an eye exam pre-trial shows no abnormalities. And, of course, I shall be followed closely by a retinal specialist once enrolled.

So. There is that. An option. Today was a day for straight talk so I asked the what ifs. If I progress or experience side effects that would disqualify me from the trial, what else is there? Dr. Lin said we would peruse a portfolio of phase one trials at that point (clearing house). And, there are two potential fourth generation ALK inhibitors in the pipeline, but I may not fit the requirements for the first one or the timeline for the second (early 2022).

And then I moved the conversation to worst/best case scenario. If I don’t respond, six, seven months? She was slightly more optimistic, feeling I could make it through the holidays. And best case? Well, I’m not likely to reach seventy. Maybe not even sixty-five–and this is based on the irreversible damage in my lungs. However, if I have an opportunity to try and respond to multiple treatments, she felt a few more years were reasonable.

Just yesterday I was thinking about what it was like to simply assume that you would live another twenty years. And also about how long it had been since I had assumed/presumed anything of that sort.

That said, I have always felt that I had the potential to reverse what was happening to my body. Against the odds, but possible.

I no longer believe that to be true. This is based on my recent scans, but also how I am feeling. Exhausted. Often short of breath. And for the first time, in pain. Alice said this is either pleural effusion or tumor pressing on the adjacent nerves. Yesterday I had a five hour zoom meeting and I was out of tylenol. This girl poured some bourbon in her coffee cup. I shared this with Jess today and her only comment was at to whether or not it helped. And it did.

So, that’s the naked skinny. In all its unclothed veracity.

The ugly reality. That’s my most recent scan on the left—ten weeks ago on the right. My left lobe is disappearing.

Thursday

Tomorrow is the day. Hopefully I shall come home apprised. And then, apprise you in turn.

But in the meantime, let’s do a partial parse of that radiology report.

First off, it’s waaay too long. Big, bushy, unwieldy. Loaded with details that I both want to know, and don’t. As in, this might be interesting if it was not my body they were talking about.

And then there is the dictionary inducing terminology. We’ll start with sentence one: There is biapical pleural scarring with increase in the adjacent pleural fluid at the left lung apex. I was googling furiously, starting with word three: biapical. It means two apexes, the next word I googled. Let’s start there. Apex is an anatomical feature denoting the place where the upper lobe begins. So correct me if I’m wrong, but biapical would seem to imply two lungs.

About that scarring. Another word for it is pulmonary fibrosis. The scary thing about it is both the associated lack of function (breathing) and the fact that it is considered irreversible. Concerning. To say the least.

Next up–parenchymal. This is defined as ‘relating to or affecting the functional tissue of an organ.’ And, in this context, consolidation: essentially–‘when the air that fills your airways in your lungs is replaced with something else. More loss of function.

Anteriorly and inferiorly‘–front and back, top and bottom.

Subpleaural nodule: exactly what it sounds like. A nodule, below the pleural lining (‘a thin membrane that lines the surface of your lungs and the inside of your chest wall.’). Intralobular septal thickening: (to be distinguished from interlobular septal thickening): ‘a form of interstitial thickening.’

Still with me?

Lymphangitic spread of tumor: (I’ve got this one)–cancer that has spread to your lymph nodes.

Loculated left pleural fluid: associated with conditions that cause intense inflammation, like empyema (heaven forbid, that one–it involves pus, despite the fact that it sounds like something you might order in a Mexican Restaurant).

Reticular opacity: ‘belonging to a broad subgroup of pulmonary opacification caused by a decrease in the gas to soft tissue ratio.’

Subpleural bands: more opacity. Alectasis: complete or partial collapse of lung. Loculation: ‘the compartmentalization of a fluid-filled capacity into small spaces (locules) by fibrous septa: ‘anatomical or pathological sheet-like structures that subdivide a component of normal anatomy or a lesion.’

So there you go. Now you can read my radiology report with bravado.

Now let’s hope we can find a way to address this laundry list of pathology.

And here we go

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.

I’ve been on mute

I have been a little quiet, a situation my sons called attention to. They’re good that way, my boys.

The truth is, I’ve got a lot on my mind. Trying to figure some stuff out, with a whole heck of a lot going on.

First and foremost is the hackathon, and I shall provide a detailed accounting of progress made thus far soon. In the meantime I have been learning more about this beast inside me, thanks to full genomic profiling by Foundation Medicine and Lucence. Both companies generously donated their services, as part of the group effort to come up with some therapeutic options for me. Thus far nothing actionable, but rather some intriguing details that may have a bearing on choices made.

I’m learning a lot, and am overwhelmed by both the interest and generosity of engaged parties–both individuals and entire companies. But it has also kicked me into thoughtful mode. Not a bad thing. Just a quiet thing 😉

Just in case anyone thinks

…for even a minute that I’m not having a great time. That’s me, yukking it up with my friend Bill Burke. Photo by my pal Annie Steuernagel. Three inoculated artists on a Sunday. Looking at photos before moving on to oysters. Ain’t life getting grander.

xo