Posted by: Teri Simon | 2012/01/03

Changing Protocols–again!

Hello, my friends.  Here’s the update I promised you on Sunday, a whole day early!  Read on:

I had my CT scan yesterday as scheduled.  I have been NERVOUS out of my mind since Sunday (at least) for the results, but was operating on my “no news is good news, bad news travels faster” way of thinking.  So, of course, something happened.  Yesterday afternoon, Dr. Horn’s nurse called me to tell me that she needed to reschedule my appointment (originally for Wednesday) to Tuesday (that would be today) because Dr. Horn had had one of those icky airline experiences where you get all fogged in and can’t make it home when you really need to be in clinic on Monday, and apparently Wednesday was gonna be a bear, and Dr. Horn wanted to be able to spend more time with me than offered on a Wednesday rush.  Uh oh.  Yeah.  Of course, everything on my schedule could be reorganized, because I only know extremely wonderful people who are flexible (!), so that was OK.

So this afternoon, my wonderful brother (and please don’t think for a second that my sister hasn’t been any less wonderful just because she wasn’t here!), and my wonderful daughter, Taylor (and please don’t think Joey and Emily aren’t wonderful just because they weren’t with us), joined me for my appointment with Leora Horn this afternoon.  The news was yet another “Tevye on the one hand/on the other hand” kind of proposition.  On the one hand, the lung tumors are stable (YAY!!!!!), and there are no new growths anywhere else.  On the other hand, there are now scattered tumors in my liver, and the largest liver tumor has grown by 50%.  So that means Tarceva was a fail.  Not a BIG FAIL, because lots of my tumors are stable, but a fail, because it’s just too much growth in my liver.  Sigh.  Disappointing.  New protocol.

Leora offered me options:  to start on another infused chemo called Alimta (a/k/a Pemetrexed); to try another clinical drug trial, to do the Alimta + Celebrex (another clinical trial, but not so scary), or to try adding the Avastin back in with the Tarceva.  Talking about the clinical drug trial made me cry, y’all.  I’ve told several of you already, and today I told Leora, when I finished editing the blogs for the 2nd book, I went into shock when I read about what I’d been through in March and April of last year.  I’m still stunned that I survived all that.  It still hurts my feelings.  I told her that I’m sorry, that as much as I want to be a good soldier and help out, I simply cannot do another clinical drug trial right now.  She reassured me that that was OK, and then told me that she had to stop reading my Flying Elephant book because it made her cry!  She gave it to her husband to read, and he said it was really good.

We discussed all the other options fully, and pretty quickly eliminated the Tarceva/Avastin one.  I agreed to the Celebrex trial, only to find out that people who are allergic to Sulfa (that would be moi) are ineligible for the trial.  SO, drum roll, please……

My new protocol, which begins next Monday, will be an infused chemotherapy called Alimta.  It’s given every three weeks, and I’ll have a CT scan (I think) in 6 weeks (after 2 rounds) to see how it’s doing.  It’s a drug that I can stay on indefinitely.  Of course, they kind of all have been like that.  There are neat things to take to help it along, like Folic Acid, and steroids and Prilosec.  But I won’t have that Tarceva rash and itch anymore, and hopefully the stomach stuff will go away, too.  And I’ll be able to lift a Volkswagen again.

I’m sad, y’all.  I’m disappointed, and yes, I’m a little ticked off.  And slightly nauseous.  It gets harder as you go, I think.  And I told Leora that I think it’s not just that every time the protocol changes, we patients come to the new thing with a more battered body because of previous treatment, we come to it with a battered mind and spirit, too.  Kind of like a PTSD that the chronically ill have to deal with.  Which is why I had Leora “up” my dose of anti-depressants today, too.  And why I am reeeeeally  grateful for Gilda’s Club Nashville.  And for my excellent siblings and kids and family and friends and Blog Buddies.  It just doesn’t work without y’all.
As always, I am grateful beyond words for your support.  Please know that you have mine, as well.

Much love,
Teri, the once again disappointed Flying Elephant, changing her protocol



  1. My arms are wrapped around you giving you lots of love and support.
    Love you lots,

  2. Sigh. I join in your sad, disappointed, ticked-off and nauseous response . . . and yet you had me laughing about the Volkswagen business. Say what you will about steroids – they do seem to empower their host. I think this rollercoaster you are on must be more like OTSD (O for ongoing), and I just HATE that for you, Teri. I really, really HATE that.

    And I really, really LOVE you. And Dr. Horn. And the fact that there is another protocol to follow, folic acid and all. I am beyond glad your brother is here and am sending warm winter hugs your way to help tuck you in tonight after an exhausting day.



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