And so I did. But over the past week or so I have been living quietly. Grieving, as yet another friend passed. A person too bright, too young, too loved. And yet, too soon gone.
Healing. I have a lot of healing to do. Physically and emotionally. A respite, if you will, before the next trial.
My latest scans were essentially stable. Not according to the radiologist, who saw progression. My oncologists always review the scans themselves, and Jess felt they were unchanged. I’ll go with her assessment.
As far as next course of action, I will likely enroll in the Lorlatinib/SHP2 inhibitor trial.
My big concern is that like binmetinib, a MEK inhibitor, SHP2 inhibition has the potential for retinal side effects. So that is an if for me.
However, by the time I would start, there should be several others enrolled and therefore additional data per potential adverse events.
In two weeks, I will check in with my team. In a month, scan again. And then, maybe, rock and roll.
In the meantime, this space traveler is enjoying the hell out of not feeling like shit.
I had a zoom meeting with Dr. Jessica Lin and Dr. Alice Shaw today to go over my scans. And…despite the fact that I am feeling more symptomatic, everything looks relatively unchanged from the previous scan six weeks ago.
However, Alice assured me, I know my own body and she takes my assessment seriously. Bottom line, this likely represents slow progression—too subtle for scans that are spaced six weeks apart.
The plan is to wait two weeks for another infusion of DS1062-a. Ideally I would have at least one more infusion after that, but once again after four or five weeks rather than three in the interest of side effect management.
Then we would reassess. Of course, I always want to know what my future options are. I am happy to report that there are two, a virtual wealth. First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, (G1202R, S1206F and G1269A) Alice feels my cancer is still primarily driven by ALK–the secondary mutations representing an effort to get around ALK inhibition. Hopefully a combo will cover enough bases.
I would characterize this as good news. I already knew my cancer was progressing but I am reassured that the progression is slow. And I like the sound of two options vs one. Better yet, should I have to begin with the MEK inhibitor/lorlatinib, it will not preclude my enrollment in the SHP2 trial.
So there you go. Business as usual. I still have cancer. But I also have options.
First we reviewed my scans and discussed the findings:
Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.
Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis.
Additional sub solid nodules in the left lung are stable or slightly increased in size compared with the prior exam.
Slightly increased small loculated left pleural effusion.
No surprises there and I am grateful that the word slightly predominates. It is clear where this trend is going but it would also seem that we have time to figure out what the best approach shall be.
First, I am to start nebulizing in an attempt to address my bronchorrhea–the source of the persistent crackle in my left lung. And should it get worse, there is the option of combining pemetrexed with lorlatinib–which would mean leaving the trial and getting lorlatinib by prescription. Avastin could be added to the mix for possibly greater efficacy. Alice is going to start the ball rolling in that direction so that I can apply for financial assistance to help pay for the deductible on lorlatinib–just in case. However pemetrexed kicked my butt energy wise when I was on it seven years ago, so this course will only be as needed.
Most exciting is the news that Alice is going to be opening her own trial at MGH in a couple of months–combining lorlatinib with a MEK inhibitor–binimetinib. She feels this is something that could be effective in my case, so it is my first choice.
Also encouraging is what has been going on behind the scenes in Alice’s lab. My last biopsy identified three secondary acquired mutations. One, G1202R, I had previously and lorlatinib is likely at least somewhat effective against that yet. The other two are newly acquired: S1206F and G1269A. S1206F is rare; Alice has not seen it in any of her other patients. However G1269A is becoming a more common mechanism of resistance to ALK inhibition, along with G1202R.
Alice then shared with me that they have been attempting to make models of all the possible combinations of my three mutations, so as to test drug against them.
I tell you what. This is not the Cadillac of health care, it is the Bugatti La Voiture Noire. It is incredibly humbling to understand the astounding degree of highly personalized effort being expended in the interest of saving my ass. So I damn well better show up.
Yes. That branch just got a little bit thicker–it might even be sprouting some new growth. Alice’s parting words to me were ‘If anyone can do this, you can Linnea.’ To which I responded, ‘If anyone can do this, we can, Alice.’