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I met DC in April. He was 62 years old and was principal of a Montessori school. He had smoked a half pack a day for three years in college (which makes him a former/light smoker in my book) and was in fairly good health until the December before when he developed a cough. His cough didn’t get better and thanks to all the talk about lung cancer screening, he requested a chest x-ray. The x-ray revealed a mass, which led to CT scanning. The CT scan shows a large right upper lobe mass, which was hot on PET as were lymph nodes. MRI of his brain revealed metastatic disease and leptomeningeal carcinomatosis. Biopsy was obtained via EBUS, which showed NSCLC, adenocarcinoma subtype.
What is leptomeningeal carcinomatosis? Well, inside the brain, there is a lake called the fourth ventricle; it’s filled with fluid called “CSF” or cerebrospinal fluid. This lake lets out into a river at the base of the brain, which leads down the spinal cord. Leptomeningeal carcinomatosis means that cancer cells have gotten into this fluid-filled space. This state bears a very bad prognosis in lung cancer. Patients typically experience neurologic problems such as visual difficulties or unsteady gait and decline is typically rapid.
When I met DC, he quickly impressed me as a thinker. I remember being impressed that despite being weak from his cancer (PS 2) and having brain mets plus leptomeningeal disease, that he asked sharp, insightful questions. His gait (walking) was a little unsteady, but his speech, strength, coordination, and intelligence showed that his brain was pretty much working. He was accompanied by his wife, who was very supporting at that time and has been a regular ally in DC’s care, keeping me updated about how he’s been doing.
DC had already met a radiation oncologist and there were plans in place to start whole brain radiation. I agreed with this, and also ordered lumbar puncture. My fellow numbed DC’s back, and then inserted a very thin needle into the CSF space to withdraw some fluid. The pathologist then looked at the fluid under the microscope and the presence of cancer cells confirmed leptomeningeal disease. I don’t give chemotherapy at the same time as brain radiation, so I had no conflict between waiting for EGFR test results to come back vs. treating right away with chemo. I ordered EGFR mutation testing and asked DC to come back after completion of his whole brain radiation. His EGFR mutation testing came back positive.
At the time I met DC, I was well aware that Dr. Mark Socinski had treated a similar patient with pulse tarceva and that it had worked-Dr. Socinski’s office was next door to mine and he was mentoring me. I had also read Dr. West’s report (which I blatantly stole the above picture from) of a similar patient right here on cancergrace and had heard scattered stories from other doctors. And so I approached DC with more optimism than I had ever approached a patient with leptomeningeal disease before.
What is “pulse-dose” tarceva? Well, the standard dose of tarceva is 150mg per day. Actually, patients with EGFR mutations can do well on much lower doses, perhaps as low as 50mg per day. At standard doses, the drug doesn’t get into the brain very well, but research has shown that at higher doses, it does get in. So, pulse dose tarceva gives many pills all at once, instead of spread out as a daily dose. Based on the good results of Dr. Socinski’s patient and Dr. West’s patient at 600mg every four days, I chose this regimen.
DC initially tolerated therapy well, although he got briefly admitted to the hospital for fevers of unclear source. We never found infection and they got better with Tylenol. His tumors all showed good response to therapy. By June, his energy had improved sufficiently that I graded his PS at 1. Today, his scans again look good. He reports living an essentially normal life and just had a great time on a vacation to Canada. In summary, he’s been living a high quality life for 7 months (so far!) with stage IV lung cancer including mets to both brain and the leptomeningeal space. Neither he nor I have any plans of that stopping anytime soon!
I’m writing about DC’s case, with his permission, to get the word out about this treatment option that now has many reported cases. Since Dr. Socinski’s case report and Dr. West’s cancergrace.org post, there have been many published case reports and case series of similar patients.
I find one particularly striking. Memorial Sloan Kettering Cancer Center in NY looked back on 9 of their patients, all with EGFR mutation, who all developed leptomeningeal disease while on standard-dosed tarceva or other similar drugs. This group is a bit different from my patient, Dr. Socinski’s and Dr. West’s-these patients had already seen tarceva (or a similar drug) and the cancer managed to spread to the leptomeningeal space despite it. These patients were given a regimen of 1500mg weekly and the results were very good. 6/9 patients had a radiographic partial response in the brain. 1 patient had stable disease, and the other 2 had progressive disease. Of the five patients whose disease in the rest of the body was evaluable, 3/5 had stable disease and 2/5 had progressive disease. The median time to progression in the brain was 2.7 months and median overall survival was 12 months.
There are other reports from all over the world with various pulse-dose regimens for leptomeningeal disease and they all give promise to this therapy. In my opinion, this regimen has become a very strong option for the patient with EGFR mutation and leptomeningeal disease.
DC has been sending me journals of his progress on therapy. I’ve enjoyed them as a window on the life of a patient and they gave me the thought that he might want to comment on this post. I invited him to do so, and here’s what he had to say:
Time to step back from the trees and look at the forest. Cancer is a trip: you develop the habit of watching your body like a hawk, and it is sometimes hard to know what is a regular headache and what is the cancer. Nonetheless, you watch yourself constantly. I’m one of the lucky ones – gradually but pretty inexorably we saw progress: early on certain days after taking Tarceva were characteristically better or worse, but the pattern changed and by this time it is pretty hard to predict. But by now usually 3 days out of 4 are good days – sometimes 4/4. Spiking a fever and going to the ER and hearing the liver enzymes were “elevated” was scary, but the next week it looked like my body was learning to handle that, like everything else. You learn to live each day more-or-less thinking you’ll be able to do what you plan to do (If you don’t overdo it) but never quite sure. But I’ve been able to work almost full time for weeks now, go out to dinner when we planned to – as long as I take it easy in between. Each day is just unpredictable in terms of just how good it will be.
It is also true that by this time I’ve learned more about cancer. Both Dr. Wong and Dr. Weiss have explained things. Kathy has feelings about each doctor’s styles, but I’ve learned from both, and I believe both care about me. I’m probably easier than some to care for because I listen and I’m doing well. But they have explained from the start that they could “treat me, but not cure me.” And as they both have explained, each in their way, the cancer will, eventually, find a way around the Tarceva and gradually return. That is how I see the beginning of the end, even though vague references have been made to “other chemos” we could try. Thankfully, I can enjoy the present – a time when cancer is on the wane – a time when your friends can jauntily email you with boxing metaphors as if I am bloodying my enemy with every Tarceva punch. Perhaps I am.
There are worse ways to be very sick. I can have a great time and I’m surrounded by friends and family. I am more glad I’ve been the teacher and parent I’ve been because my children, my wife, relatives, family friends, former students, current colleagues and students – I feel the love and am happy to feel it. A good guy doesn’t always finish first, but always finish surrounded by friends. I can reflect on my life and be really really proud. I have no regrets. I can reflect on all this and yet know I’ve got lots of time left to enjoy what comes next. The decision to retire next year is immensely “freeing”, and I thank Kathy for suggesting it. (written June 9, 2011)
Since writing those words in June, the family and I have taken our usual two plus weeks in our cabin in the woods of Maine, and we both have returned to full time administrative jobs at our respective schools. Since medications are down to practically nothing, Tarceva every 4th day and some other vitamins and minerals I’ve picked up over the years (to satisfy my desire to improve my health without substantially changing my lifestyle), the days go by without much thought about cancer. Except the week I go for scans and consultation with the good Dr. Weiss. Then I’m hungry for the data. Can’t help it – I can watch the ups and downs of the stock market and not lose any sleep if my portfolio loses 2% in a day (over time it’s held its own) – but I want to see shrinkage in a tumor because the day cancer starts “progressing” (an odd term for getting worse again) feels like the beginning of the end, and I haven’t had to go there yet because it’s been shrinking. I’ll adjust – I’m an optimist and a happy person (it will be harder on Kathy). But like everything else about having cancer, it’s a series of ups and downs that you just have to live with. It is what it is.