Friends and Family,
Before Genevieve and I met with Dr. Cetnar today to get my CT scan results, I had the usual paperwork to fill out. The first question on the sheet is, “What are your concerns today?” I wrote, “Making sure that my excellent health continues.” I have felt so confident lately that it has gotten easier to fill in that blank with positive affirmations. Last month I wrote “World Peace,” since I had almost no concerns about my own health.
All that changed today. When a doctor’s opening line is, “I have good news and bad news,” you know what is coming next. In this case the good news is that there has been no increase in the number of little cancer mini-tumors throughout my lungs. The bad news is that a couple of the biggest ones have doubled in size.
If that was the end of the story it would be no biggie, since the biggest tumor is only 2 cm (3/4”), but what it means is that the cancer is learning to work around the Tarceva. It will only escalate from here.
So now we are left with a decision about what to do next. Here are the options Dr. Cetnar suggested:
1. Continue with the Tarceva, and use radiation when the little tumors get too big. This sounds like a crappy option to me, since I have hundreds of the little suckers, and I just can’t imagine that the radiology team can accurately zap a bunch of little spots and hit the targets.
2. Go through chemo again. He doesn’t like this idea, since chemo didn’t shrink the cancer at all last time around. However, it did stop the cancer from growing for some time. Not only that, but he was surprised to hear that my previous oncologist hadn’t used the same chemo cocktail that had been effective in shrinking the tumor that I had eight years ago. That gives hope that it might work again this time. The side effects aren’t fun, and the outcome statistics show a pretty short-term gain for most people, but it beats a poke in the eye with a sharp stick, at least by a little.
3. There is a clinical trial on a new treatment (AZD9291) that targets my cancer’s genetic mutation, but only if the cancer has further mutated in just the right way. My chances of having the right new cancer mutant are 60%. To add a little more challenge to this, there are only two places in the country that are running this clinical trial right now. The closest is at UC San Diego. He doesn’t know if they are accepting new patients.
4. I could start on afatinib, which is similar to Tarceva. About 11% of the people who switched when Tarceva stopped working had shrinkage of their cancer. However, what we didn’t find out is what percentage were able to stop their cancer from growing. It would be great to get rid of it, but I would be happy with a drug that stops it in its tracks for any length of time.
There are other options, all of which Dr. Cetnar thinks would be chasing rainbows.
The upside to all of this is that the growth has been so minor that we don’t have to race around in panic mode to come up with the next step. If the cancer was growing faster we would have to make a quick choice, maybe more out of desperation. Instead, we have time to evaluate the options.
This is a lot to absorb in the last three hours, but we worked out an initial plan. Dr. Cetnar and I will both call UCSD and see whether they are admitting new patients (since sometimes they listen more to the doctor, and sometimes they listen more to the patients advocating for themselves), and what it would take to get me in the trial. Meanwhile, I will also try to get a consult at MD Anderson in Houston, which Dr. Cetnar says is consistently rated one of the top two cancer centers in the country.
I am extremely fortunate in how this is turning out. I have a buddy in San Diego that has been on a remarkably parallel path to mine. He is close to my age, has the same type of non-smoker’s lung cancer, started Tarceva about the same time as me, had radiation to his hips at almost the same time as I did, and just started on this AZD9291 clinical trial two months ago. He is the one who told me about this trial. Long ago my oncologist met the AZD9291 pharmaceutical rep at a conference and asked to be part of the first wave of clinical trials, but he never heard back from the rep, so he didn’t know that clinical trials were actually underway. Hearing about it from Craig may end up saving my life, or at least extending it for a healthy interval.
All your positive energy and prayers are very much appreciated right now, and I do mean POSITIVE energy! Leave your pity behind! Bring on the cheerleaders!
Love,
Dann
Before Genevieve and I met with Dr. Cetnar today to get my CT scan results, I had the usual paperwork to fill out. The first question on the sheet is, “What are your concerns today?” I wrote, “Making sure that my excellent health continues.” I have felt so confident lately that it has gotten easier to fill in that blank with positive affirmations. Last month I wrote “World Peace,” since I had almost no concerns about my own health.
All that changed today. When a doctor’s opening line is, “I have good news and bad news,” you know what is coming next. In this case the good news is that there has been no increase in the number of little cancer mini-tumors throughout my lungs. The bad news is that a couple of the biggest ones have doubled in size.
If that was the end of the story it would be no biggie, since the biggest tumor is only 2 cm (3/4”), but what it means is that the cancer is learning to work around the Tarceva. It will only escalate from here.
So now we are left with a decision about what to do next. Here are the options Dr. Cetnar suggested:
1. Continue with the Tarceva, and use radiation when the little tumors get too big. This sounds like a crappy option to me, since I have hundreds of the little suckers, and I just can’t imagine that the radiology team can accurately zap a bunch of little spots and hit the targets.
2. Go through chemo again. He doesn’t like this idea, since chemo didn’t shrink the cancer at all last time around. However, it did stop the cancer from growing for some time. Not only that, but he was surprised to hear that my previous oncologist hadn’t used the same chemo cocktail that had been effective in shrinking the tumor that I had eight years ago. That gives hope that it might work again this time. The side effects aren’t fun, and the outcome statistics show a pretty short-term gain for most people, but it beats a poke in the eye with a sharp stick, at least by a little.
3. There is a clinical trial on a new treatment (AZD9291) that targets my cancer’s genetic mutation, but only if the cancer has further mutated in just the right way. My chances of having the right new cancer mutant are 60%. To add a little more challenge to this, there are only two places in the country that are running this clinical trial right now. The closest is at UC San Diego. He doesn’t know if they are accepting new patients.
4. I could start on afatinib, which is similar to Tarceva. About 11% of the people who switched when Tarceva stopped working had shrinkage of their cancer. However, what we didn’t find out is what percentage were able to stop their cancer from growing. It would be great to get rid of it, but I would be happy with a drug that stops it in its tracks for any length of time.
There are other options, all of which Dr. Cetnar thinks would be chasing rainbows.
The upside to all of this is that the growth has been so minor that we don’t have to race around in panic mode to come up with the next step. If the cancer was growing faster we would have to make a quick choice, maybe more out of desperation. Instead, we have time to evaluate the options.
This is a lot to absorb in the last three hours, but we worked out an initial plan. Dr. Cetnar and I will both call UCSD and see whether they are admitting new patients (since sometimes they listen more to the doctor, and sometimes they listen more to the patients advocating for themselves), and what it would take to get me in the trial. Meanwhile, I will also try to get a consult at MD Anderson in Houston, which Dr. Cetnar says is consistently rated one of the top two cancer centers in the country.
I am extremely fortunate in how this is turning out. I have a buddy in San Diego that has been on a remarkably parallel path to mine. He is close to my age, has the same type of non-smoker’s lung cancer, started Tarceva about the same time as me, had radiation to his hips at almost the same time as I did, and just started on this AZD9291 clinical trial two months ago. He is the one who told me about this trial. Long ago my oncologist met the AZD9291 pharmaceutical rep at a conference and asked to be part of the first wave of clinical trials, but he never heard back from the rep, so he didn’t know that clinical trials were actually underway. Hearing about it from Craig may end up saving my life, or at least extending it for a healthy interval.
All your positive energy and prayers are very much appreciated right now, and I do mean POSITIVE energy! Leave your pity behind! Bring on the cheerleaders!
Love,
Dann