Diagnosed with stage 4 lung cancer with mets in right eye (1), multiple lymph nodes (8+), and brain (2).
Radiosurgery to treat the two brain tumors on 7 Nov and started crizotinib (Xalkori) 8 Nov. Had an incredible response to Xalkori.
Scans at the Mayo show fantastic improvement – the eye tumors are completely gone, one brain tumor is gone, one brain tumor has shrunk, lymph node tumors seem generally steady but there are 2 new brain tumors.
Confirmed resistance to crizotinib (Xalkori). Begin attempts to secure lorlatinib.
Second round of radiosurgery on the 2 new brain tumors 10 Apr. Begin lorlatinib 20 Apr.
Sunday, 14 October
Brad finally convinced me to go to the hospital for a visual disturbance I’ve been having in my right eye. I’d been putting it off because I was focused on kicking a really bad cough. St. Paul’s hospital was no help as they didn’t have an ophthalmologist on duty Sundays but they gave me a list of other hospitals to call. As luck would have it, Adventist Hospital was able to get me an appointment with an ophthalmologist the next day.
Monday, 15 October
The ophthalmologist identified a retinal mass in the eye and immediately admitted me to the hospital for a string of additional tests. They even scheduled an emergency after hours MRI.
While imaging the mass, the MRI turned up 2 additional tumors in my brain. The poor ophthalmologist came by to give me the news late that night. Brad slept over in the hospital and in the morning we met the oncologist.
He showed us the MRI images and noted that these tumors were secondary tumors. The next step was a full PET-CT scan to find the original cancer and any other metastases.
Thursday, 18 October
In the morning, one of my lymph nodes that had been a little annoying before was suddenly visible to the naked eye as an ugly lump. That, even more than being half blind in my right eye, made this real.
I went in for the PET-CT. The basis for this test is that cancerous cells can only metabolize glucose and they are greedy fuckers. After avoiding carbs and some fasting, an injection of radioactive glucose goes straight to the cancerous cells.
Friday, 19 October
The oncologist was at a conference in Berlin but emailed the results: “The PET-CT suggests that you have lung cancer spreading to intra-thoracic and neck lymph nodes, together with brain metastasis.” Next step: biopsy to see exactly what we’re dealing with.
Thursday, 25 October
Biopsy day. the oncologist is back from his conference and explained that the immediate results of the biopsy will be knowing if the cancer is “small cell” or “non-small cell”. The former accounts for about 15% of lung cancer cases. If it is small cell, we’ll start chemo tomorrow (Friday). If it is non-small cell, we’ll wait a week or two for a molecular profile to know which targeted therapies will be most effective.
Friday, 26 October
Yay! Non small cell. Now we wait.
Monday, 5 November
We met with the oncologist for the results of the genetic sequencing. “Significant Mutations in Lung Panel are detected; EZR-ROS1 fusion variant, EGFR amplification and FGFR1 amplification are detected.” Additionally, the cells are classified to be “high PD-L1 expression.” Overall, this is great news as they are susceptible to targeted therapies and immunotherapy.
Our treatment plan is:
- Wednesday: go big on radiation therapy for the two small brain tumors
- Friday: start crizotinib, the most effective targeted therapy for my mutations
- If things go well, keep at it. If things don’t go so well, look into immunotherapy or one of the other targeted therapies.
I’m still looking to get a second opinion at Queen Mary’s Hospital but am happy to be moving forward on treatment.
Tuesday, 6 November
Today I got to make a mask to hold my head in place during tomorrow’s radiation. While the mask hardened, I had a CT scan to check on the position and size of the tumors. I’m curious to see how much they’ve grown, if at all.
Looking forward to radiation tomorrow – Brad’s making dinner!
Wednesday, 7 November
Radiosurgery was fast and easy. Tomorrow I start the crizotinib (brand name Xalkori) – one day earlier than expected. They do not mess around here.
Thursday, 8 November
Started Xalkori. My days are just a blur of vomiting.
Friday, 9 November
Started an anti-vomiting drug. Still nauseous and tired but doing better every day. Next Friday I have a blood test to make sure my liver is tolerating the Xalkori.
Friday, 16 November
Today was an appointment with the oncologist to make sure I’m tolerating the Xalkori. My liver function is great so I can stay on the meds. Next appointment is a follow-up in 3 weeks for a blood test and chest x-ray to see how the tumors are responding. In 3 months we’ll do a full PET-CT scan and brain MRI.
I did have a blood test that showed the cancer indicators have increased but that was compared to mid-October. We didn’t have a baseline for immediately before treatment. The lymph node tumors behind my clavicles that were pretty big and visible to the naked eye (big marble size on the left, little marble size on the right) have shrunk massively (I can’t even feel the right side anymore). Also, the vision in my right eye has improved somewhat although I don’t know if that’s my brain figuring out how to compensate for the retinal distortion or a reduction in tumor size. Best of all, between the Xalkori, codeine, and oxygen, my cough is almost gone and I can sleep in any position I want. Glorious!!
Next appointment is 7 December. In the meantime, I’m working on getting off the anti-vomiting drugs and codeine while reducing my dependence on oxygen.
Wednesday, 21 November
Just an update to say how amazed I am by the Xalkori. My visible tumors have all but disappeared, my eye has stopped getting worse, and I’m down to 1 codeine a day to manage cough. I still need supplementary oxygen and 14 hours of sleep a day but the results are overall miraculous. 18 months is the average period that Xalkori works like this so my life may be close to normal for a while – once I figure out how to cover the $10k US per month cost ($15k US/ month in the US).
Friday, 7 December
Today’s test showed no progression in the lungs and a decrease in blood cancer markers. The cancer seems stable. Unfortunately, my immune system and liver have taken a hit from the Xalkori. Most surprising to me is how drastically my white blood cell count has dropped. My body really *needs* all the immune building I’m trying to do. Until I can build it back up I’m at significantly increased risk of infection. Not bad enough to go off Xalkori, though.
We check in on the eye and brain tumors via MRI in two more months as we need to wait 3 months post-radiosurgery to see real results. We’ll also do a full PET-CT scan then to confirm that things are stable. In the meantime, continued regular blood tests to make sure Xalkori is helping more than its hurting. Next check in is 4 January.
Friday, 4 January 2019
Blood results were fantastic. Cancer markers are down to normal. I still have a low white blood cell count and compromised liver function but the hyperkalemia from the last to tests is under control. Next big test is January 30 and 31 when I have the full PET-CT and MRI and the Mayo Clinic. NED – No Evidence of Disease – is my goal. If I can ever get there I can reduce my Xalkori to a half dose saving my liver and $5k US per month. I’m feeling very very positive.
Friday, 1 February
PET-CT and chest CT show that my body tumors have substantially reduced in size and number. My eye tumor is gone. The two brain tumors targeted with November’s radiation are gone. However, I have two new brain tumors. The Mayo Clinic oncologist recommends I make a change from Xalkori (crizotinib) to Lorbrena (lorlatinib), another Pfizer TKI that can cross the blood-brain barrier.
Sunday, 4 February
I’ve decided to stay on Xalkori and check in on the new brain tumors in 2 months. Explanation of the reasoning here. Next check in with the HK oncologist is 1 March.
Friday, 1 March
I’ve officially developed resistance to Xalkori. MRI next week to see if my brain tumors have grown enough to qualify me for the Boston lorlatinib trial.
Wednesday, 6 March
Results of Monday’s MRI show that the 2 new brain tumors are now 2mm and 5mm. 5mm is the minimum for the Boston lorlatinib trial so I emailed them the report. Now we wait to see if I qualify.
Tuesday, 12 March
I had an updated PET-CT scan. I need to show no progression of the body tumors to qualify for the Boston trial. Results come Friday but based on the 1 March blood test results I expect to show progression.
Friday, 15 March
PET-CT results weren’t too bad but it looks like there may be some progression. I’m running down ways to get access to lorlatinib and will be doing another round of stereotactic radiosurgery later this month.
Wednesday, 8 April
My monthly blood test shows continuing skyrocketing of blood tumor markers. Also, the planning MRI for my second round of stereotactic radiosurgery showed the brain tumors had increased in volume by almost 8x in the last month.
Round two of radiosurgery had much less agonizing recovery than round one. I credit the water fast I did for the three days prior and day after.
I’m feeling an increased urgency to start lorlatinib and plan to fly to the US to pick up a month’s worth while I wait for my Compassionate Use delivery to Hong Kong.
Saturday, 20 April
I started lorlatinib three days after discontinuing crizotinib. In order to increase its chances of working, I water fasted for 75 hours prior to starting and liquid fasted (broth only) for 30 hours after. I experienced no side effects or even nausea on day one.