Latest CT Results: My Streak is Over

Friends and Family,

After six years and four months on Tagrisso, there has been a small amount of growth in one of the spots in my lungs. The change is small, but packs a wallop. This oblong tumor is now just a millimeter longer than four months ago.  For comparison, a millimeter is about the thickness of a credit card.

That small change isn’t even noticeable in my breathing, so the only issue is what it means for the future. The drug will still work to some degree for a while, but now there is an end in sight. Before this, Genevieve and I could dream about how much longer this good luck streak could hold out.

The plan from here is to get a PET scan in another 6-8 weeks. For this type of scan, radioactive sugar molecules will be injected into my veins. Those molecules congregate where there is cell hyperactivity … meaning where there is active cancer. They “light up” the cancer, so the radiologist can see if it has spread to other spots in my lungs, or other parts of the body.

The best case scenario would be if the scan shows that just the one spot, or even a few spots, are growing. If that happens, I’ll get radiation only to those spots, and we’ll kick the can down the road a little further.

If there are too many spots for radiation, I will be pressing my oncologist for a new biopsy. This is because the only way to know how the cancer is mutating, and what treatments may work, is with a new biopsy.

It’s slightly comforting to know that usually when the cancer starts growing again for people on Tagrisso, it grows slowly. This takes some of the panic out of figuring out what the next treatment will be. It also gives more time to look into clinical trials and get a second opinion if there isn’t a clear course of action after the biopsy.

I’ve been extremely fortunate to go more than five years longer than the average time on Tagrisso before having progression. The goal is always to buy more time, and make each treatment last as long as possible, so the next treatment will be developed by the time I need it. New lung cancer treatments are coming out so fast that I just need some luck and some time to keep outrunning the monster. So far, this has worked incredibly well. Here we are, almost fifteen years after I was first diagnosed. At that time, my life expectancy was months.  

This has been hard news for us to take, but not completely devastating. Each time cancer starts growing again, it’s like a mini-grief episode, combined with fear of what will happen next. That’s why it has taken me a week to write to you. I’ve needed time to process it. But I think I’m getting there. The word that keeps coming up for me these past few days has been “grateful.” I’ve had so much more time and quality of life than most with this diagnosis, and I’m not done yet.

So that’s my word for the day: Grateful.

Feel free to make it yours.

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Love,

Dann