June 19, 2014 (Thurs) – A Man, a Bear, and an Anteater Walk into a Bar…

Sure sounds like a lead-in into a joke. And it could very well be. Just not in this case. And the bar? After the past few weeks, that is where you might have expected to see me tossing down a few tall ones. If I were a drinking man. Oh yeah. I am. Well, here’s what could driving me down that path:

Up until last Friday, I understood my options to be: 1) A clinical trial at UCLA (if T790M mutation detected in my tissue sample); 2) Clinical trial at UCSD (if C-Met mutation); or 3) chemo therapy if neither came back positive. We already knew that it came back as T790M positive so we were just waiting to see if by any chance it also came back hitting the plus sign on C-Met. I finally got an e-mail from my onc-docconfused sign last Friday morning who told me that the lab came back with a big negatory on the C-Met. So I’m off to UCLA, right? Think again. Remember that Pachinko machine? Ping-Ping-Ping. No, the rest of his e-mail indicated I now had two options: A trial up at UC Irvine (same as the UCLA one apparently) or 2) waiting for a new T790M trial in UCSD (more specifically AZD9291) that was to begin in about 6-8 weeks. And essentially I was asked what I wanted to do.

So I could begin commuting to UCLA or sit on my butt for 8 weeks waiting3 guys for the SD trial, all the while Fuzzy is having his way with me. Oh, but I could begin some chemo-therapy in the meantime to tide me over. Not liking the options presented, I asked my onc-doc to call me so we could chat. So he calls in the afternoon and said after talking with the lung-onc specialist at UCSD, it turns out that they had expedited the application and would be starting the trial in next couple of weeks. OK, that pretty much narrowed down my choices.

Well, despite the bouncing around, after all was said and done, it looked like I was going to end up with the best option.

Looks can be deceiving. Well, that’s not fair because, right now, it appears I will be headed to UCSD. And yet, you know that is not the end of the story, right?

Cancer lungRemember the tissue sample issue? That the idea was to have enough tissue to do both tests? And that is exactly what was done. End of story, right? Positive for one, negative for the other. The fact that it took a month is a whole other tissue-issue. Ah, now we enter the realm of clinical trials. The drug companies are very picky about how their trials are run. They want to keep the variables at a minimum and, before they spend a bunch of money on potential patient candidates, they want to confirm the specific piece of data that would make someone eligible for the trial. In this case, having a positive test for the T790M mutation. I bet you have an idea where this is headed, don’t you?

The clinical trial, and this would apply to any clinical trial, needs to do their own tissue sample test to confirm the evidence of the mutation. In other words, they cannot accept the results of the lab that already provided that test result. So this begs the question as to why we did the test in the first place if it would have to to be repeated for any possible clinical trial. Very good question, or so the lady running the trial at UCSD told me. Unfortunately my question was never really answered to my complete understanding.

Bottom line is, they need to test a new sample of tissue from my lung. Last I heard, there was not enough tissue left to do a tesbeert which would necessitate, yes, wait for it….., another biopsy. And an additional 2+ weeks to schedule and get confirming test results. Ergo my desire to power down a few barrels of suds. Not sure even Rombauer could soothe my frazzled psyche at this stage.

But now the latest word from UCSD, and they have been awesome in staying in constant touch with updates, is that there may be, possibly, perhaps, perchance, enough tissue left to preclude another biopsy. It all comes down to how much the trial people require in terms of a tissue sample. I am supposed to hear back by the end of the day tomorrow, Friday, as to that determination. Stay tuned.

In errorthe meantime, I have to admit that I can feel the effects of the fuzzy encroachment on my lungs. When you get winded leaning over to tie your shoes, you know somethin’ ain’t right. Tried to play softball this past week and I’m guessing my teammates maybe wished I had remained a cheerleader after a missed play and an error resulted in a 7-run inning by the bad guys. But I am paying for it with a large lump on my shin where the afore-mentioned error ricocheted. Hey, I did get a base hit and it only took me 5 minutes to recover from the run down to first. I have to admit I now get very jealous when I see joggers, even though I was never really an exercise-enjoying dude, unless I was playing something. I miss feeling like I was in some semblance of shape. Never an elevator guy at work, I now find myself taking it to go two floors. Pretty sad.

So this trial involves replacing my current daily Tarceva with a new drug AZD9291 (you clinical types can click here for some additional info). And no, placebos are not allowed in a trial of this nature so I will be getting the real deal. It shows promise but that’s why they call it a trial. I’m just anxious to begin fighting back. Then again, the trial requires a certain size lesion that has not been previously biopsied so who knows if I will pass muster or not. Told you the trial types were picky. Should know fairly quickly. Uh huh. I know, you’ve heard that before.

kfcUnfortunately part of the recent fuzzy progression has resulted in a loss of appetite. I’m not shedding tons of weight but I am really having to force myself to eat and have slowed down the weight loss a bit. Tonight when my wife was out at a dinner party, I did something I have not done in at least 3 years. Figuring I need to gain some weight, and being the healthy kind of guy I am, I opted for a rare indulgence: KFC. Heck, what’s it gonna do? Kill me? OK, that was a bit of sick humor. In the old days it was known as Kentucky Fried Chicken, just like Pops cereal used to be called Sugar Pops and Frosted Flakes were Sugar Frosted Flakes. What’s in a name, eh? Back then I could easily have powered down a 5-piece meal deal. Tonight I couldn’t finish a 3-piece version. You know I’m sick when I can’t finish my fried chicken. My sibs will attest to that. Heck, I have lunch for tomorrow I guess.

OK, I’ve run long enough and I’m getting winded typing. All right, it’s not that bad. But I suspect I’ll be posting a new update in the near future in any case. We meet with the lung-onc specialist on Monday to lay out a game plan.

Business as usual. Day at a time.


27 thoughts on “June 19, 2014 (Thurs) – A Man, a Bear, and an Anteater Walk into a Bar…

  1. My thoughts and hopes are with you. How can you not like a guy that looked like a young Magnum PI just a few short years ago (still pretty close) 🙂 I really liked the pic of you and KIm, was so cool to remember how we were. Take care, I think of you guys often. Aloha!

  2. Geez Craig, can’t believe all the ping pong crap you have had to endure. You’d be entitled to down a keg 🍻 or a barrel 🍷with all this that you are dealing with. Your blogs continue to amaze, and, are probably a good form of documentation for you as well. You continue to be in my thoughts and prayers as “No one fights alone”. Xoxo
    PS…I ‘m drooling over the thought of KFC🍗

  3. I hope they have enough tissue so u dont have to go thru another biopsy. I am sure Monday wont come soon enough. Best Wishes Craig. I am going to pass your blog on to my friend Sue Bunten who is also a friend of Mike and Sharon.

    • Thanks Lynda. Keeping my fingers crossed on the need (or lack of need) for another biopsy. The procedure is not horrible but the extra time that would be required before I can actually begin treatment is what would bother me the most.

  4. I always enjoy your posts, not what you are going thru, but the way you tell it. 🙂 I try to eat healthy most of the time, but some good old KFC is tasty every once in a while.

    • Linda, yeah, I figured if anything might break through my lack of appetite it would be KFC. But I think I will need to get back to my healthy smoothies and maybe add some caloric ingredients.

  5. Hey Craig
    Glad to see you are opting for ucsd. Lets try to get together, i am in the price center. Heckofa way for you to visit me though.we are pulling for you!

  6. Pulling for you, Craig. As always I read these reports with special care and love.. I’m on a medicine that killed my appetite. I lost 13 pounds. So I know it’s really necessary to just eat anything. I know you will. You’re basically a healthy guy. Please give my love to that wonderful wife of yours. She must be going through her own Hell. I have my white band out to move to Arizona with me. Think of you everyday when I look at it.

    Karen Spencer ks9013@gmail.com 916 300-2057

    • Thanks Karen. Yeah, not having an appetite is sure a new thing for me. Never been a problem before. It’s feels weird just forcing down food because I know I need to eat. Even my favorite foods are not doing the trick. But I will definitely keep an eye on it and eat a bunch of ice cream if I have to…J

    • Steve, actually I did have an excuse but it wasn’t a bad hop. The runner on second blocked my view and I never saw the ball. That’s my story and I’m sticking to it. Hope to improve on my performance tomorrow.

  7. Hi, Craig, I have been waiting for the AZD9291 clinical trial opening in California for my husband. But first, he needs to get the T790M This drug got a lot of positive feedback during its trials in Boston, Houston and Denver. I am happy for you getting into this trial and in UCSD. My husband went to UCLA late last year for a clinical trial. There was lots of driving and sometimes, we had to stay overnight for a test before the treatment! Best Wishes!!!

    • Shu, thank you for the note. It appears this is the first time this Phase II trial will be in the US. I’m very anxious to get started as the results do seem to be quite good. Not having to commute to UCLA is definitely a plus but I would have done whatever it took to get started on something.

  8. Craig,

    Your humor, your words and the irony of life within them, remind us all what a special man you are. Reading you posts help so many others. Thank you for the spirit that is within you to share your days and thoughts.

    Fondly, Charlotte Weizer Joseph

    • Thanks Charlotte, for the extremely kind words. Somewhat overstated perhaps, but I’ll take ’em. J It’s mainly therapy for me but if others get some benefit out of my blog, all the better. Hopefully soon the tone of my writings will get back to the “I can’t believe how good I feel.” I hate to sound like a whiner.

  9. Just wanted to send some good thoughts this way – hoping that you get into the trial with minimal issues and that it turns out to be a big gun in your arsenal of weapons!

  10. Hang in there, Craig – and yes, now’s the time to indulge all those previous cravings, relatively guilt free! Keep taking the battle to Fuzzy – cheers!


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