Exhibit A (ALK+)

By last weekend my GI tract had returned to what now passes for normal, and I was ready to get back in the game. Pete shipped up north for a dance at his former school and then on to a friend’s house, and Melinda and Kihan joined us for the grown-up version of a sleepover. At dinner my companions went through several bottles of fine wine; I teetotaled.  On Easter Sunday we scooped up Peter and the five of us went to brunch. Aside from that repast and the giant Easter Basket Melinda assembled for Pete, the holiday would have come and gone without much fanfare. End of an era it would seem; no more egg dyeing, stuffing (the plastic kind) and stashing for the hunt. Should any of our progeny produce grandkids, perhaps we will revisit these activities.

Monday I drove to Boston for my scan review, and was able to grab some time with my friend Ginger beforehand. It is always lovely to see her, and we must do it more often!

At the appointment, Alice (Dr.Shaw) showed me the most recent scans side by side with the ones from February. Overall, there is no significant increase in size of nodules, and the activity in my right lung remains remarkably stable. Unfortunately, what remains of my left lung, the scene of the original crime, is a bit of a trouble maker. The radiologist who read these scans is very thorough, and the report is lengthy and replete with detail. To wit (not even the complete report):

“There is a mixed solid ground glass opacity in the peripheral left upper lobe beginning on image number 60 extending through image number 67. This is increased in density when compared to the prior examination. …there is mild increase in ground glass opacity in the lingula adjacent to the pericardium in images 71 and 72. There is a region of increased ground glass opacity in image number 76…there is some increase in ground glass opacity adjacent to the left ventricle on image number 91 and 95…when comparing to the examination of November 2011, the mixed attenuation lesion in image number 65 is increased in size and density. The ground glass opacity in the inferior lingula has also increased.”

Lotta lotta ground glass being tossed around. However, the final impression is:  “These findings may represent mild increase in minimally invasive adenocarcinoma in these regions”. Minimally invasive adenocarcinoma is the new term for BAC, or broncioaveolar carcinoma. I have some quarrels with this change in nomenclature, but that is for another blog.

At any rate, the areas of greater consolidation mean that I am no longer stable. However, particularly viewing the scans, which didn’t look that bad, I feel it was yet a good report. Aside from my three week respite with the hepatotoxicity, I have been on LDK since September 7th, 2011, and I believe I’m going to get a lot more mileage out of this particular therapy.

Tuesday I returned to Boston for a double header of sorts. I finally had the opportunity to meet my friend Craig, who is ROS1 positive and on trial at MGH as well. Craig has written a great deal about his own experience on Inspire, the online support group we both belong to, and at my urging, he will soon do some guest blogs here as well.

Following his appointment, Craig joined me for the opening ceremony of the Paul S. Russell Museum of Medical History and Innovation at Massachusetts General Hospital. Doctor Russell and Boston’s own Mayor Menino cut the ceremonial ribbon (actually high tech gauze), after selecting their tools of choice from an array of surgical implements borrowed from the museum’s collection.

My claim to pride of place at the ceremony was due to the fact that some video footage of myself and three other individuals–one of whom is my friend Greg, appears in an exhibit showcasing the use of targeted therapies at MGH. And now, for my best ‘I’m part of a museum exhibit’ smile:

If you are interested (my moms never get tired of this stuff), here is a link to some related content as well as the original video.

8 responses to “Exhibit A (ALK+)

  1. Congrats on stable enough! Loved the video too! Great job MGH! Now if only they could make it go viral….
    Sharon

    • Ha! No chance of that (viral). And just as well…I’m hoping they (our friends at MGH) are devoting most of their time to developing new therapies!

      Linnea

  2. Interesting–the new name for BAC. Didn’t know. Looking it up tonight. Thanks for the info.

    • Sure thing Cynthia. WHO (World Health Organization) made the decision a year ago, and there are some gray areas (into which I, for instance fall). More on that later…

      Linnea

  3. It’s always sobering to see or read summaries of all you’ve been through.
    Loved seeing Alice (Dr. Shaw) and the halo around her head. Here’s to a LOT more mileage out of this therapy.
    xo to you

  4. With my Mom I used to think of the “ground glass” as beautiful pieces of breathtaking colored stained glass. You go girl. Love, Sherpa

    • LInda! Good to hear from you. If it were true (ground glass=stained glass) I’d have a hell of a window by now. It is indeed breathtaking (and perhaps not in the way you intended), but I give you points for putting the most positive spin possible on the situation. Hope you are well.

      Linnea

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s