November, or searching for points of light?

If November were a fish, I would throw it back.

Actually, that’s true of 2011 thus far, I’ve said as much each month.  November is no different, and actually makes October look serene in comparison.  At least October had three blazing weeks of fine hot weather, and I was home a bit (although Hubs was only home for 7 days).  So what has November got us?

My Dad’s first chemo cycle, which could be considered a good thing, if chemo could EVER be considered “good”.  A horrific pulmonary infection (let’s just call it pneumonia), which I’ve probably been toting about for some time.  A CT scan, the second one for the clinical trial I’m on, which shows new growth.  Of course now I wonder if it’s inflammation from pneumonia?  And a sister-in-battle in the Netherlands, spiralling downwards due to Leptomeningeal Carcinomatosis (my most-feared nightmare in terms of lung cancer – worse than having one’s brains eaten by zombies while still alive).  It’s no wonder I can never finish these posts.

I felt pretty crummy after 9 days in SoCal.  Really run down.  After a couple days of rest, I thought  I felt better.  I had severe chills the night before my UCD appointment, and daybreak found me feverish, disoriented, peaked.  Thank goodness for small blessings, my friend and trial companion of late, Lisa (Hub’s former boss’ wife) drove us to Sacramento or I wouldn’t have made it.  I handed over the cd with my latest scan on it, prepared to get booted from the trial.  After a few minutes, my study onc entered the room with a student, pulled up my latest scan and the one from May on the monitor and giddily revelled at how much better I’ve done since I entered the trial!

OMG, could that be right?  My friend and I gave each other the side-long glance of knowing and decided I wouldn’t argue or even say anything about the stabbing pain in my chest and the fog rolling over my brain at that moment.  In fact I couldn’t, so overtaken was my body with infection that all mental clarity had been lost the night before.  I nodded and grunted, finished the blood draw and pharmacy pick-up routine and off we went.  At In-n-Out, I wasted half a hamburger and all my fries, so frozen and feverish was I.  The drive home from Hub’s old shop consumed the last drop of energy or concentration I had left and once home I passed out in an almost narcoleptic fit.  The following day I saw my regular onc, who prescribed plutonium level antibiotics and hoped I didn’t have a pulmonary embolism.  He was surprised by being allowed to stay on the trial but was sure that once the appropriate scans were received in the mail, I would be off the trial.  He’s convinced it’s time to move on anyway, before I slide too far.  So we’re eyeing the next stone, which happens to be in Colorado.

The stone in this instance (and I’ve been looking at it from afar for a while now) is the clinical trial of Afatinib (BIBW2992 of Tomtovok) with Cetuximab (Erbitux) in patients who have acquired resistance to Tarceva (due either to c-MET amplification or development of the resistance mutation T790m, or unknown reasons).  University of Colorado is the only west coast site for this trial, the other 3 being Boston, NYC, or Nashville.  Why would I do this?  For my particular lung cancer histology and driver mutation, it’s the best thing to come around since Tarceva (erlotinib).  That speaks volumes, as Tarceva gave me my life back (if not my hair or skin).  In terms of side effects, the trial drugs sound brutal.  Itchy hands and feet, rash everywhere, diarrhea maybe 4x/day, etc.  However, I know someone on the trial who went from his deathbed to duck hunting, another woman who can ride 20 miles on her bicycle some days, and another who works full-time!  It may or may not work for me, but there’s been a 90% response rate in a selected population of people like myself (EGFR+).  If I don’t enter the trial at this juncture, I probably won’t be eligible for later phase studies (inclusion criteria becomes limited to the chemo-naive/less-treated population), and I’ll miss the opportunity to try this combination until it becomes approved, which may be 2014 or later.  It’s now or never and as long as I qualify and can get on a plane, I’ll be damned if logistics will get the best of me.

But yes, it’ll be enormously challenging.  I think I’m looking at staying in Denver for a bit or flying in 6 weeks in a row.  Or some combination of the two.  After that, it’s every other week, which is doable.  It’ll be expensive, no doubt about that, but what is my life worth?  I’m not a materialistic person so I’ll probably spend the equivalent of what someone else might spend on bags, shoes, clothes, jewelry, and fancy gadgets.  Or commuting 150 miles/day in a truck with a V-8 engine (I know someone who does this – isn’t that about $300/week on gas?).  But I’m getting ahead of myself here.  It hasn’t happened yet.

There are so many things bound up in these decisions.  People who don’t understand, and there are many, wonder why one would go through such great lengths to try something which may not work.  Well, everyone has their way of coping and until they are diagnosed with a terminal disease, they won’t really know what choices they’d make to either extend their life or improve the quality of the time that remains.  My experience tells me that a silver bullet can go a long way, so I’m willing to go out on a limb to find the next one.  While I still can.  In a few months, my answer may change.  In a few months I might just let might doctor decide.  Until then, he’s at the mercy of my research skills :-/

So, good things – we get to spend Thanksgiving with my folks.  By all accounts, my father is doing well after his first chemo cycle.  The bro is in an apartment close to my parents.  Hubs may be home for Christmas, even if we physically might not be home (as in, we may be in Denver?).  No trip to New Zealand/Australia at Xmas, which we’d hoped for, but oh well.  Hubs’ old company is giving him the work truck he’s been driving for 3 years, which is awesome.  I’ve given up on gardening – that was a hobby for another time and place…I know there’s more, and I’ll think of them.

For now, I’ll set my sights on recovering from this nasty bug, and going to see Hugo.


4 thoughts on “November, or searching for points of light?

    • Thanks, Greg. Happy that you dropped by! Must admit I miss your blog but I haven’t been reading much out in the blogosphere…I’ve always envied your traveling and what not. Hope all is well with you and you’re ready for the holidays!

  1. I’m impresed with your research skills…good for you for finding a trial in Denver and more than anything I hope you’re accepted as it sounds very promising. Tarceva seems to be working for me (at least for now) but who knows what the future brings. I have my next CT/PET scan in December before Seattle. If you get Netflix we saw some good French films this weekeend at our film festival…”The Hedgehog” (it was even better than the book) and “The Women of the Sixth Floor” are just a couple. My son lives outseide of Sacramento and his wife was treated for breast cancer at UC Davis but unfortunately she died a year ago in August. My son is raising their two boys…on our way to New Zealand and Australia next April we’ll visit them for a few days. .May your pneumonia clear up, your pain go away,and I hope you have an incredibly wonderful Thanksgiving with all your family.Patricia

  2. Those films sound lovely, though I’m unable to find (The Elegance of) The Hedgehog on Netflix. I’ll keep looking – definitely my kind of movie! Thanks for the tip.

    I’m sorry to hear about your DIL. In a strange way I’m still surprised when I hear of a breast ca death. The amount of research dollars spent on BC is mind-boggling, esp. when one compares the $1000/lung cancer death vs. $27,000/breast ca death.

    I hope Tarceva gives you a long run. Hopefully something else as powerfull will emerge soon (like the trial I hope to join).

    Have a wonderful Thanksgiving as well!

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