May 14, 2014 (Wed) – Geezer Mutant Ninja Hurdles

TurtleWow, was that a stretch. I agree.

But once I have an idea in my head I force it to fit. And God knows I ain’t no teenager. So, do I look ready to do battle? I guess that’s the idea. I’ve had it relatively easy for 15 months. Emphasis on relatively.  Phase II coming up, yet still to be determined. But it will be a tougher battle (hurdle) whatever the path I take.

So my wife and I met with the lung-onc specialist Monday to determine the next step in this journey. She confirmed that the first step would be to do another biopsy of fuzzy so that they can get the tissue testedDiagram for whatever mutation has caused it to become resistant to the Tarceva I’ve been taking. And depending on those results, I essentially have 4 directions I could head. Here is a simplified diagram that my doctor drew up that makes it more understandable:

Thus, there is a 50% chance I will test positive for the T790M mutation which would mean I’d be eligible for a UCLA clinical trial. There’s a 30% chance I’ll test for the C-Met mutation which would mean I’d stay in SD for the clinical trial. In 20% of the cases, neither of these would test out and they don’t know why. That would mean I’d begin a regimen of regular chemo-therapy. On the slim chance (4%) that this comes back having mutated to Small Cell Lung Cancer (currently I am Non-Small-Cell), then I would begin a different chemo therapy. And SCLC ain’t a good thing, not that NSCLC is good. But that is the last option I would want to have happen. Ergo the sad face. And yes, for you math nerds (like me) I know the total is 104%. But that is how the diagram was drawn for me.

So I am on pins and needles awaiting my biopsy which will be performed this Friday morning. That was a very poor pun since a hollow needle will be used for the tissue extraction, otherwise known as a core biopsy. Same as the one I had more than a year ago when I began this journey. Sorry if you just finished your dinner…Forgot the TMI warning. I was going to use a picture but that would indeed be over the top. I’m sure you can use your imagination.

finger in dikeMost likely I will remain on Tarceva for the time being because there is no way to know if it is still offering some benefit. No sense pulling the finger out of the dike if it is just leaking. Certainly OK by me. Don’t need to open the flood gates to fuzzy.

All that said, the doc made us feel a a bit more at ease in terms of the urgency level we are looking at. With our daughter’s wedding two weeks from Friday, I didn’t want to have to carry a barf bag with me down the aisle. By the time the tissue sample is read in the lab (about 5 days after the biopsy), it would only be another week before the wedding. She said, very confidently, that there is no concern about waiting until the week after the wedding before beginning whatever treatment is in store. Whew. I feel a whole lot better. Of course I would have had a built-in excuse for my lousy dancing which I will now have no explanation for. Eh, trade-offs.

So I sit here typing this more-clinical-than-usual blog while surrounded by boxes of “stuff” and duffel bags filled with more stuff. San Diego was hit with 8+ fires today that started with the 100 degree weather and high winds. There were two small fires firenearby that were quickly handled. Thank you firefighters! But all of us in this community are a bit skittish after the two fires in 2003 (330 homes in our neighborhood destroyed) and 2007 which caused us to evacuate. So we have our stuff ready to load up in the car. Hopefully the cooler weather predicted for the weekend will knock down the risk a bunch.

So, next news will probably be in a week or so with results of the biopsy. Stay tuned.

Business as usual. Day at a time.

May 10, 2014 (Sat) – Who’s on First?

abbott_costelloAbbott and Costello would have been proud. This past week and a half have been, shall we say, interesting. If you look up “miscommunication” in the dictionary (OK, Google – when was the last time you looked at an encyclopedia, if you even know what one is?), you’d see a picture of two doctor’s offices, along with moi, trying to put something together that should have been very easy. Especially in this day and age of e-mail, voice mail, cell phones, yadda yadda. Shoulda used a carrier pigeon – it might have been quicker and more straight forward.

So in summary format, here, day by day, is how it went down:

Wednesday (April 30): Had my PET scan in the morning. They said my onc-doc should call within 24 hours.
Thursday (May 1st): Per my uncle-docs’s earlier request, I called him to remind him to review my scan. Not sure why that would be up to me but hey, whatever speeds things along. Had to leave a message after being on hold 5 minutes. Later that afternoon, about 5:30 or so, as you know, I got his not-so-happy-news call at that restaurant. He said he would set up a consult with the lung cancer specialist (I shall now call “lung-onc”) at UCSD Moores Cancer Center. The plan was that her office would call me to schedule an appointment. Or so I understood.
Friday (May 2nd): Based on prior experience, I honestly did not expect to hear from them on this day. And my expectations were met.
Saturday (May 3rd): Worry, fret, worry, fret…
Sunday (May 4th): Breath of Hope Walk – awesome support for Team Craig – Get Fuzzyhesaidshesaid
Monday (May 5th): Called the clinical trial lady at the lung-onc’s office at UCSD to check on the status of my appointment. She said that the two docs had spoken and she thought that they had indicated that another biopsy would be in order first, before I met with the lung-onc. She said I should hear from my regular onc-doc’s office to schedule that biopsy. Can you say “ping-pong?”
Tuesday (May 6th): I called my onc-doc’s office late in the morning, and after 10 minutes on hold (somewhat common for that office), the nurse came on the line. Of course my onc-doc was out for the rest of the day. She said she had nothing in her records about scheduling a biopsy. She indicated that she would text my onc-doc to see what was up. She later called and said he texted back indicating that he knew nothing abouWahtdoyouthinkt a biopsy. He said he would get in touch with the lung-onc specialist to work things out.
Wednesday (May 7th): Got a call from the onc-doc’s nurse saying that the two docs still hadn’t spoken, that they were waiting for the lung-onc to call them. She said she’d call me back that afternoon. I did not hear back from her by 4:30 so I called again and she said they still had not heard anything. She’d get right on the phone and call me shortly, or worst case, the next morning. Guess which it turned out to be? Duh.
Thursday (May 8th): Got a call from the onc-doc’s nurse who said they (the two onc’s) had agreed that I should see the lung-onc specialist first and that I should expect a call to set up that appointment. Can you say “deja vu?” That is exactly where I was a week before. So of course I did not hear back on Thursday. Another Gomer Pyle surprise-surprise. Not.
Friday (May 9th): I called the lung-onc’s office to see about the appointment and the person I spoke to initially Hot Potatosaid she didn’t see anything in the file about scheduling an appointment. Why was I not surprised? As she dug deeper, she saw that there was a note about setting up an appointment and yes, she could do that for me. Initially she wanted to schedule it a week and a half away and I told her that was not acceptable, that I had waited over a week and nothing had been done. So she finally got me scheduled for this Wednesday.

However, that was not the end of the story. My wife called me right after I got off the phone to say that there was a message on our answering machine from someone else at UCSD (yes, we still have an answering machine, along with our land-line) that said I was scheduled to see the lung-onc on Monday morning.

Don’t get me wrong. I feel that I have had excellent quality of care over these past 15 months or so. My onc-doc is a great guy, even though there have been a misdiagnosis or two (remember my arthritic hip?). And the lung cancer specialist is the expert in town. But trying to get the two of them on the phone at the same time is next to impossible, apparently. And the support staff are seemingly, OK obviously,  not always in the loop. If I hadn’t taken the initiative (several times), I could virtually guarantee you that I still would not have an appointment. Now, I realize that communication where I work is always 100% accurate and timely. OK, you can quit laughing Kris and Wendy. So I really am not in a position to throw stones. And yet we’re talking a delay in whatever treatment is next on the agenda. And as the patient, knowing the Tarceva has probably run its course, I feel like a sitting duck. And of course, now that I know something is brewing in my chest, I have started to feel some discomfort there. Power of suggestion or ??

In the meantime big fuzzy-wuzzy is having a litter in my chest, and who knows elsewhere. In my head I envision a bunch of pacman-type creatures gobbling their way through my upper reaches, with no ghosts to interfere with their progress. All the while I wait a week for news of an appointment that will only (hopefully) provide the options available to me. But no active treatment yet, other then the Tarceva, which may or may not be doing any good at this stage. Obviously Tarceva is not the super hero it once was. But we knew it would lose its super powers over time and I am not dissing it. Mr. T has allowed me to live a fairly normal life for the past year+; a fact I am eternally grateful for.

So that is where I stand. I am meeting with the lung cancer specialist at Moores late Monday morning. Hopefully after that meeting we will have a game-plan in place so we can begin picking these buggers off. Did I just say pick and buggers in the same sentence? Sorry ’bout that.

Although we will have to wait for the official word, my guess is that there are several possible options. A biopsy may be ordered to see if Mr. Fuzzy has changed (mutated) or still has the same composition that the first biopsy a year ago determined. If it has changed, perhaps there are other drugs that might offer some benefit. Or there may be a clinical trial that I am eligible for. If not, chemotherapy may be next on the menu. Stay tuned.

Team PhotoAnd although many of you are probably sick of seeing yet again, one more Team Craig – Get Fuzzy photo,  for those not on Facebook, I need to add a final chapter to that wonderful event. We by far had the most participants (over 60) of any team and we came in 2nd in the amount of funds raised. Not too shabby. Over $100,000 was raised by all of the teams for the Moores Cancer Center in support of lung cancer research. Fair warning, I’ll be hitting you all up again a year from now. 🙂

Business as usual. Day at a time.

May 2, 2014 (Fri) – Surprise, Surprise, Surprise

No cutesy cartoons of Jim Nabors (Gomer Pyle) to accompany this title. Because, unfortunately, the title is referring to news that is not at all humorous and I did not want to make light of a serious turn of events.

Got that call late yesterday afternoon from my onc-doc that I have been anticipating/fretting over regarding the results of Wednesday’s PET scan. Of course, I was somewhere, as before, where the noise was not very conducive to having a conversation. But this time I was able to move to a quieter area. Not sure I wanted to hear what he had to say as I was concerned that the hip discomfort that has been nagging me was a sign of things not-so-friendly coming back.

So the good news is that my hip is not showing any significant change. The bad news is that fuzzy has returned to, not one, but both lungs now, with multiple metastasis (mets). OK, that was a big surprise. I was thinking that at worst case, it might come back at my hip and we would be able to zap it again. ‘Fraid that is no longer an option and the Tarceva benefit seems to have run its course.

So where to from here? Good question. My onc is getting me an out-of-group referral to the lung cancer specialist at Moores Cancer Center. There may be a clinical trial available to me for some alternative treatment. If not, then most likely I will need to begin chemotherapy fairly soon. Of course, just before my daughter’s wedding at the end of the month. Shoulda taken the wedding photos before. Well, my daughter is a Photoshop guru so maybe she can work some magic if it is needed. Otherwise I just might be styling with that beret I modeled in a much earlier blog.

I will keep this blog short as that is about all of the news I have. Obviously I will update it once I have more of a game-plan in place.

And once more, and finally, thanks again to all of you that have supported this Sunday’s Breath of Hope walk. That support is appreciated today more than ever before, and the fact that it is benefiting Moores Cancer Center is even more apropos at this stage. I’ll see a bunch of you Sunday morning.

Business as usual (well, not really). Day at a time (for sure).