In early 2019, Cancer Commons patient Claudius received a diagnosis of stage IV non-small cell lung cancer (NSCLC). Molecular testing showed that he could be a good candidate for treatment with Tagrisso, a drug that had recently been approved for his condition by the U.S. Food and Drug Administration (FDA).
Claudius shared his story with our science writer from his home in the San Francisco Bay Area:
How were you first diagnosed?
I’d been a pretty healthy person for most of my life, but all of a sudden last year, I started to cough whenever I talked; a dry cough. After probably two or three weeks, I booked an appointment to see my doctor. At first, she gave me some antibiotics, but after a couple of days, I told her it wasn’t working. Then she ordered a chest x-ray, which showed there was a buildup of extra fluid in my lungs.
Next, I had a procedure to remove some of the fluid so I could breathe more easily and so tests could be run on the fluid. Only one liter could be drained at this time, and there were closer to three liters around my lungs. But once they took it out, I didn’t cough anymore; I felt perfectly fine.
Then, I had an appointment with a lung specialist, who told me, “It’s cancer and because it has spread into the lung fluid, it is stage four, and there is no cure.” I was really shocked. I just said, “How long do I have?” And he said, “Well, it’s not curable, but it’s treatable. I’m going to refer you to the oncologist.”
How did you and your doctors choose your initial treatment?
My first oncologist was not great; I had two appointments with him, maybe half an hour each, and he was rushing. But he told me, “Usually lung cancer will spread to the bone and the brain.” He ordered some scans, and he was right; there were metastases in my spine and in my brain.
I switched to another oncologist who was closer to my office, and she explained everything about my options. I knew nothing about lung cancer; like I said, I had been pretty healthy. She told me it would be best if my cancer tested positive for a genetic mutation in a gene called EGFR because then I could take a targeted therapy called Tagrisso; not only could it help treat the cancer in my lungs and spine, it could also help address brain metastases.
Before the EGFR results came back, I was sent to the radiation doctor who was able to treat my brain metastases in one session. The spine was trickier. My CT scan showed a metastasis in the L2 vertebrae, which is not that serious and was removed with radiation, but the others were in my neck. The radiation doctor wanted to treat the neck spots with radiation too, but my oncologist recommended waiting to see if I could take Tagrisso because radiation would hurt the bone in the long run.
Then my molecular test results came back showing that I was positive for a specific EGFR mutation called L858R. So, I started Tagrisso on May 14 of last year.
How did your lung cancer respond to Tagrisso?
I had a PET scan exactly one month after I started Tagrisso. It was very encouraging actually; the report said my disease was responding to the medication, and the tumor in my lung was shrinking. Everything else was getting much better, too. I’d had a catheter placed to help drain extra fluid that was building up, but after one month of Tagrisso the fluid was dramatically reduced. In August, a couple days before my birthday, I had the catheter removed because I no longer needed it.
In September 2019, I had another PET scan, and those results were also very good. The metastasis in my neck had shrunk, but the spot in my lung pretty much remained the same. Four months later, in January of this year, the C3 vertebrae in my neck where the metastasis had been was fractured and damaged, so I started wearing a neck brace when I drive to prevent damage in case I am in an accident.
But in January I also got the best PET scan results I’d received so far because the only spot mentioned was in my lung. The doctor told me, “This kind of recovery used to be called a miracle.” I also had another CT scan of my neck, and my spine surgeon told me, “Well, you don’t need me any more; you’re recovering really well. It’s rare to see this kind of recovery; maybe 1 out of 100.” That was the happiest time of the whole journey for my wife and me.
How have you been recently?
My most recent PET scan was in May. I didn’t receive the results as soon as I usually do, so I knew something was wrong. My doctor called and said, “Everything is fine except that there is a new spot on the L2 vertebrae.” I asked her if that meant the Tagrisso had stopped working, but she made an analogy: the garden is fine as a whole, but a weed has sprouted. So if you can just take out that weed, then you don’t need to spray the whole garden.
She said to remain on Tagrisso but to see the radiation doctor I saw last year. So I have now had radiation to treat the new spot in my spine, and I’m hoping it got taken care of. But the next scan will be pretty scary because it will confirm whether the Tagrisso is still working or not. For now, I am still taking one Tagrisso pill every day.
What was your experience with Cancer Commons like?
I heard about Cancer Commons from my colleague at work. My contact at Cancer Commons helped me get more informed about the procedures that my doctors told me about. She helped me better understand what was going on and helped confirm that Tagrisso would be a good option for me.
How has cancer impacted your life?
Actually, I haven’t really skipped any work. I’ve taken some time off for scans and appointments, but otherwise I mostly keep working. I don’t want to stay at home thinking about something else. And I don’t feel anything except when the fluid builds up again and my cough comes back. But then once the fluid is out, it’s back to nothing.
I do have some minor side effects from the Tagrisso; mainly dry skin and itchiness. And I actually have one good side effect: before, I had quite a bit of gray hair, but Tagrisso has made most of my gray hair fall out, and it has become very soft.
I also lost a lot of weight in the first two months as a side effect of my initial treatments and draining the fluid from my lungs. And I changed my diet to be more plant-based; the only meat I eat now is seafood. So I haven’t gained any of the weight back.
Has the Covid-19 pandemic impacted your treatment?
No changes to my Tagrisso treatment; it’s still one pill a day. The only difference is that my provider is mailing the pills to my home because they don’t want me to go in person to the pharmacy. Otherwise, the biggest impact of the pandemic is on my work. The last day I worked from the office is March 13, and we are still working from home.
Do you have any advice for someone who has just received a similar diagnosis?
When I was diagnosed I knew nothing about cancer. So of course I had to research my options. But I would say that it is only helpful to research up to a certain point because otherwise it can discourage you. Once you have enough information to decide on your treatment plan, then you can stop because reading too much can make you lose hope. It is best to just find what works and then lead a normal life as long as possible.
But I do try to keep up with news about new drugs coming out that could work for me in the future. I hear a lot of good things about immunotherapy that are pretty encouraging. Otherwise I have no reason to change anything until Tagrisso stops working.