Lucky to be me!

Try to imagine that you’re hiking along life’s trail, happy go lucky as can be and then you find yourself slowing to a walk and then a crawl.  That’s kind of what happened to me in the fall of 2015.  Despite the house fire recovery, things were good, and then they weren’t.

I’m lucky! For lots of reasons. I’m really grateful to the FNP or PA who saw me on that Sunday at the walk-in clinic.  She did the x-ray that led to the discovery of my lung cancer tumor.  If not for her, I’m not sure help would have come soon enough, I was crawling that slowly.  But I am so fortunate that she knew to do that x-ray that day.

And then There I was at Dana-Farber Cancer Institute barely crawling (Dan thought it was time for a wheelchair) to my radiation sessions (that were for palliative care while they were developing my treatment plan) when I found out just how lucky I really am.  I am LUCKY! My cancer, at that time already spread to my liver and pelvis, was treatable with a targeted therapy drug.  Yes, that’s right. TREATABLE!  Not sure about others, but Dan and I knew that I wasn’t going to be crawling much longer if something didn’t change, so hearing that word treatable made us feel blessed indeed.

Great Educational Reading on lung cancer, genetic mutations, target therapy treatment, and more!

Back to lucky me!!  Thanks to the testing done by Dana-Farber and Brighams it was discovered as quickly as could be that the lung cancer in my body is driven by a cell mutation called ROS1.  While ROS1 is what caused the rapid spread, it is one of a few mutations that can be battled with a targeted therapy drug that truly targets those ROS1 cancer cells and not all cells like chemotherapy does. It was available at that time for expanded access, not quite FDA approved.   And, it is a pill that you take.  I am lucky.  I was dying and in just a few days the crizotinib began to work.  I started the drug on March 2 ,2016 and check out how different my lung looked by May.  (Feb.,even after radiation on right, May on left)

IMG_2968 (1)

Told you I’m lucky!  I’ve had two years since cancer crept into my body and ROS1 slammed me. Great years filled with blessings beyond thinking. If not hiking, definitely walking at a good pace and feeling pretty darn good.

Still lucky! After 16 months on crizotinib, the cancer progressed to my brain meninges. Crizotinib does not protect the brain, so when one of those little cells sneak by…  Researchers had developed a newer drug that battles ROS1 that does fight in the brain, and I was eligible for a Phase II clinical trial at Dana-Farber.  Lucky!!! This drug too will soon be FDA approved.  It is a pill taken once per day.  Since July Lorlatinib has kept everything from the neck down looking the same in scans, and it has reduced the cancer in the meninges by 75%.  Lucky, blessed, fortunate – give me a thesaurus – I’m that.

Research doctors are working on the next line of treatment to work against ROS1 when it figures out the code for this treatment and builds resistance.  I, and so many others with acquired cell mutations such as ROS1, are SO grateful.

Saying I’m lucky implies that it’s all by chance.  I know that’s not so.  Something more than chance is at work here.  I’m grateful every moment of every day.

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