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.
Pay careful attention to the final sentence in the byline.
I have attempted to explain to people why my own expectations per another life extending drug are low to nil. With ALK+ patients comprising 4-6% of lung cancer patients, it was surprising that ALK inhibitors were ever considered a viable investment. I am exceedingly grateful that they were, and that second and third generation ALK inhibitors were also produced.
However, by the time you get to where I am at (1, 2, 3 exhausted), that 4-6% is a much smaller figure, due to the fact that even though survival stats for ALK+ patients have improved significantly (6.8 years median–I believe), overall mortality is still high. So now I, and other outliers, are essentially in the rare disease category. There is very little financial incentive to produce new therapies that benefit a handful of individuals. I have argued that clinical trials should not be seen primarily as science experiments nor as a way to enrich shareholder’s portfolios—rather they are social contracts. And as part of that social contract, outliers should not be left high and dry simply because we are now a poor investment. You don’t send soldiers to war and then just leave them on the front line with no way home.
And then there is this chilling line part way through the editorial: ‘For example, there are huge incentives to bring certain new cancer drugs to market, even when those drugs have little impact on survival rates.‘
They’re talking about us. And if you follow the link, it will lead you to a previous editorial with this paragraph: ‘Based on the data we do have, the thousand-plus cancer drugs now in clinical development are quite likely to help only a handful of patients, and only a very little bit: According to one recent study, targeted cancer therapies will benefit fewer than 2 percent of the cancer patients they’re aimed at. That reality is often lost on consumers, who are being fed a steady diet of winning anecdotes about miracle cures. Those stories are heartening, especially if you or someone you love is one of the people battling the long odds who could be helped. But they omit a lot, including the number of people who aren’t saved — or even helped — by a given drug, and the likelihood that any given success would have occurred even without the new medication.’
Viewpoints such as this are why I support Dr. Alice Shaw’s transition to industry, as she has an entirely different perspective owing to her years spent in clinic. She can instill that sense of urgency as well as a moral imperative: Alice will put patients first. Fingers crossed that she is successful in identifying innovative treatments and that she is able to help bring them from bench to bedside quickly.
I view my role as a canary in the coal mine. Those of you who are fortunate enough to be walking the same path–this is of great concern to you as well. We cannot afford to be complacent. It is not enough to simply support medical research, we need to make sure there is focus on long term solutions. It is a hell of a note to make it this far only to realize that your status as an outlier means your life is suddenly worth not more, but less. In the topsy turvy world of cancer, progress is a negative and rare, not a commodity at all.
As part of the fewer than the purported 2% to benefit from new cancer drugs, I want to let the world know that my continuing survival is not a trivial thing. That it means the world to me, my children, my family, my friends. To those who have benefitted from my participation in early clinical trials. Stakeholders and shareholders alike.
A good return on an investment, I should say. But in this society that is driven not by altruism but rather commerce, I have become a diminishing return.
Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology.
My first thought was that I was grateful she was staying in the Boston area. And then my heart sank anyway. However Alice quickly assured me that she would retain one half day of clinic and so could still see patients. I was also concerned as to the impact on the clinical trial I am waiting for (it is a trial she has designed), but evidently that will still be a go.
Obviously this is something of a loss on a personal level, but I nonetheless greeted the news with overall enthusiasm. Alice will remain a champion of ALK+ and ROS1+ cancers and will be directing her energy in the lab to developing more treatment options. I am relieved that she will remain a clinician but I also believe that by focusing on discovery, Alice will use her formidable talents to the benefit of many more people.
Change is difficult and I know this was not an easy decision for Alice. I’m excited for her and incredibly proud of all she has accomplished. I also believe her experience in the clinic will translate to a sense of urgency in the lab–she will remain a fierce advocate for patients.
My dream team is going to get a remodel. I will miss the old look. But I also want Alice to be in a position where she can do more faster–to the benefit of the greater good. Alice wants that as well, which is why she is making this career move. So really, there’s just one thing to say.
I am adrift. Not emotionally, not metaphorically–really, truly at sea.
First, my housing situation; non tenable in all respects and something that has weighed heavily upon my mind for weeks now. There will be a solution but at the moment, it is not obvious.
And then, more importantly, my health.
Lungs and Airways: The patient is status post left lower lobectomy. There is essentially stable ground glass opacity in the left upper lobe on image 64, measures 3.7 cm, measured 3.64 cm in November 2018 . There is essentially stable more confluent consolidative opacity in the LEFT lower lung, along the diaphragm, best seen on image 96. Multiple other ground glass and solid nodular opacities are essentially stable, for example in the RIGHT upper lobe on image 46, 51, LEFT lung on images 51, and 89.
As reassuring as my last scan was, the fact remains that I have multiple areas of cancer in both lungs. And, at long last, some information from the biopsy on 12/14/18.
Essentially, in addition to G1202R, I have now acquired two more secondary mutations, both of which are conferring resistance by compromising the ability of lorlatinib to bind. G1269A and S1206—I am not certain of the letter following 6 on the second mutation but it is no longer Y. More importantly, neither of these newly acquired mutations is actionable. As in, there is no next therapy.
Adrift without a paddle, as it were. Or maybe a more apt metaphor is that I am in possession of one paddle yet, but it is busted. And that would be lorlatinib.
I am still expressing ALK, so Alice is hopeful that lorlatinib continues to confer partial resistance. As she put it, the cancer is working very hard to get around it. My job, in a nutshell, is to hold on (stay alive) until a 4th generation ALK inhibitor is developed.
Big sigh. This is the time to think possible not probable. And also to not only get that good china out, but to use it at every damn meal.
I want to share something wonderful with you. As a member of the ALKPositive group, I offered to start an Instagram page where photos and stories of ALK+ patients could be shared. I knew it would be special but I had no idea how special. Nor did I realize how moved I would feel as I transcribed these individual stories of suffering but also formidable grace and courage. So many beautiful faces. Almost all of them stage IV. Far too many of them young, including a number of women who were diagnosed either while pregnant or just after giving birth.
But what shines through the most? Love. Lots and lots of love. Please go to Instagram and check it out at alkpositiveworldwide. Follow us. If you are ALK+ (or if you have lost someone who was–this is intended to function as a memorial as well) and you’d like to be part of the wall, submit a photo to me as well the following information: Date of diagnosis, stage and age. And a brief statement about living with ALK+ lung cancer.
This is our opportunity to show the world the faces of lung cancer. Brave, beautiful, loving, living, finding ways to cope and always, always hoping.
Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.
Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.
I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.