June 26, 2014 (Thurs) – Dracula’s Got Nothing on my Doc

DraculaYou know by now I’m not going to dive right in and explain the title to my blog. A good author never gives everything away up front – otherwise the reader will not hang on to every choice morsel to see where this all goes, right? I suppose you could call my lung tissue sample a “choice morsel” but that’s not really what I am referring to. But before we go down that path, let’s check in with what has transpired in the past several days.

This past Monday I had an appointment with the lung-onc specialist at UCSD Moores Cancer Center. Of course, that appointment was predicated on UCSD being certified for the AZD9291 trial by then. Otherwise, there would be no reason, necessarily, for my insurance carrier to cover me for an appointment with a doc Moores Cancer Center Moores buildingoutside of my group (Sharp Rees). So, come Monday there still was no word as to whether insurance would cover my visit scheduled at 3pm. If I kept the appointment and was not covered, the visit would probably be $200-300 out of pocket. I could wait a couple days until all the red tape was taken care of but I had grown increasingly short of breath and fatigued.

Now, one of the criteria for getting into the trial was that the patient had to have at least a 90-day life expectancy left. Based on the speed of the progression of my breathing challenges, I was very concerned that I would even make it that far. So without getting a final word, I opted to keep the appointment and take my chances. As soon as I got there the lady in charge of the clinical trial told me that she had just gotten word from the insurance carrier that my visit would be covered after all.  Actually I believe she talked them into it. UCSD has been wonderful. Did I say that already?

The main lung-onc who would oversee my treatment if I got into the trial came in and I explained my physical concerns. She asked me when Pleural effusionthe last CT scan was I had and I told her it was in the ER that Monday of the week of my daughter’s wedding. Remember that top-secret visit a month ago? She asked if I could get the CD of that test and get it to her ASAP. She suspected that I was suffering from pleural effusion, aka, fluid buildup around my lung. But she wanted to see the test before she commented further. So at the end of the appointment, I rushed off to Sharp Hospital Radiology Dept before they closed to try and get that CD. I was well prepared to beg, bribe and otherwise plead near-death in order to get that CD. That’s how bad I was feeling. Yet, when I got there, the guy at the desk asked me what I wanted, I relayed my request without any drama, and he had it ready in 10 minutes. I was again blown away. Kudos to Sharp Radiology.Kudos

The next morning (this past Tuesday) my wife did me the favor of driving the CD over to UCSD first thing in the morning and dropping it off for the lung-onc. More kudos are in order for the doc as I got a call within the hour. She had reviewed the CT scan results and said it appeared I had a “large” pleural effusion, that if drained off, should offer some relief. You might certainly ask why the ER doc hadn’t pointed that out to me a month earlier, but I was so worried about missing my daughter’s wedding at the time, I was only interested in getting a hall pass for the wedding, which I got. Debating the lack of a warning from the ER-doc about possible problems coming up is something that is still on the agenda. Right now, I have bigger fish to fry.

thoracentesisSo hoops were jumped through from doc-to-doc-to-doc and I got scheduled for a thoracentisis (fluid draining) yesterday (Wed) morning at 8:30. Got a quick x-ray first to see where the mass was more exactly, followed by a sonogram to determine the best location for the jab. Yeah, another stick in the back, but this time it was not into the lung, just to the layer outside it. Much less invasive. The lung-doc, who I had never met, came in to explain the procedure and discuss exactly what to expect. More kudos. There were no surprises. Well, almost none. Wink, wink. But he brought in his in-training, cute physician’s assistant to help. Wait, did I just type that out loud? Uh, but she was only the 2nd cutest in the room, my wife, of course, being the cutest.

Good save?

The doc had explained to me that he had sometimes drained off up 2-3 bottles (1/2 liter each) of fluid from prior patients. When I saw the 500ml bottles I thought that hard to believe as I couldn’t imagine that much fluid inside someone. You know where this is going, right? I don’t do anything halfway. So here is what he sucked out of me, and he finally had to stop at 5 bottles for fear Fluid drawmy lung would react adversely to having all that nice, warm comforting fluid surrounding it sucked away. Click on the picture for the full effect. So he left about 1/2 bottle (250ml) in me. Wouldn’t want to drain me completely dry, eh? Not a big issue but something to watch for down the road if I began experiencing that uncomfortable feeling again. The slight red tint is from a miniscule amount of blood that came with it, kinda like how a drop of red food coloring would discolor a big glass of water. If this fluid had been gasoline, and that doesn’t bring to mind a comforting feeling, I’d have enough to get me about 20 miles in my Camry Hybrid. The typical reaction when I showed a  few people this picture, and the same reaction I had: Holy shit! I don’t typically swear in this blog but that is really the only way to describe it. Probably exactly your reaction when you saw this picture, especially if you clicked on it for the XL version.

Dropped about 6 pounds in 10 minutes. But don’t try this at home. Explains why I wasn’t losing weight even though I was not eating very well. Asked my lung-doc if I was OK to go to work and he said it was entirely up to me. But after draining off 2500 ml of fluid, of course I would go home and rest up, right? Of course not; you know me. Off to work I went. Business as usual, right? I could have sworn I heard my wife say under her breath, yeah, stupid as usual. Well, she may have just thought it as she is always looking out for me and feels I push this business as usual agenda a bit too far. She’s right. But I’m not willing to cut back yet. Besides, after having 2/3 of a gallon of juice removed from my chest cavity, I feel a whole lot better. Even recovered my appetite somewhat having powered down 3 (4?) pieces of pizza and two beers last night. OK, I did say somewhat recovered.

As for the trial, certification for UCSD to run the trial is imminent, perhaps tomorrow. Once that happens, I go in to sign my life away with every legal disclaimer known to man, and then they send off my tissue sample to the lab to see if 1) there is enough to do the test and 2) confirm that I am T790M positive. If for some reason there is not enough tissue, there is another possible option to create a tissue block reduced from all of the fluid samples above. I have a feeling they have enough of that. Ya think?

So after the lab confirms everything, I can formally begin the trial. The first day would be a full one with every scan in the books, along with an ophthalmology exam. Not sure the purpose for that but hey, the eyes have it. Overall we are still looking at 2-3 weeks. But now that the severe breathing difficulties are past me (at least for the time being), the sense of urgency isn’t quite what it was. I am now confident I should easily meet that 90 day criteria mentioned earlier. 🙂

So, since this is pretty much a clinical blog today and you have already been grossed out by the bottle-pic above, here is another Arm woundone to chew on. Oh, that was gross. Is this a picture of flesh eating bacteria or some horrible side effect of the medicines I’ve been taking? Nah. This is a result of my last softball game, having taken yet another bad hop off my right arm. Screw the cancer. Based on my last two blogs and bad-hop softball injury stories, softball will kill me. I think my skin must be thinned out from the medication as a big patch was just ripped back by the ball. Or else I’m just getting the old-age, thin-skin syndrome. Say it ain’t so!….And I was 0-for-4 at the plate. But hey, I was carrying around 6 extra pounds of baggage. That’s my excuse and I’m sticking to it.gas-X

Finally, got a stock tip for you: Novartis. Why? Are they developing a new cutting edge cancer fighting drug? Nah, they make Gas-X. I think I am personally responsible for a 10 point rise in their stock price. No further details are forthcoming even if this is a clinical blog. Doesn’t take too much imagination.

OK, time to wrap up. Stay tuned as I get more updates on the trial.

Business as usual. Day at a time.

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.

June 10, 2014 (Tues) – And the answer is…

confused 2Well, not really sure.

If you’ve been following my blog (of course you have), you’re probably not overly surprised at that statement.

I was trying to hold off until I had all of the data and knew where I was headed next but I couldn’t wait any longer.  I was starting to get queries as to my status so I figured I may as well give you the latest update, albeit, incomplete. Love that word, albeit. I keep wanting to pronounce it “all-BAIT” which has garnered some guffaws (another fun word) when I did indeed slip my tongue. Hey, I’m all about generating some laughs at my expense. Why not?

Finally had my appointment with my uncle-doc last Friday, the day he promised me results of my biopsy. Then again, if I wasBiopsy result a wagering man, I would have put money on not getting the update, especially since it was not really in his control, but the lab’s purview tucked away in some corner of the country. Now I might have a discussion with my bookie if either he or I tried to collect on that wager. That is because I got a partial result.

So, way back in ’74, I applied to UCLA for grad school. I was accepted but opted to postpone my advanced degree, instead choosing to enhance my education by driving a Coca Cola delivery truck, moving to Salt Lake City, and rooming with 3 girls in a 4-bedroom apartment. My wife already knows this, and it was 40 years ago, so hopefully I’m not getting into any hotter water than I am. Never did go back for that degree. If you know me personally, feel free to ask me to explain in person. I’ll not digress any further in this venue. Squirrel!

UCLA logoBack to UCLA, I may end up being a Bruin after all, at least an honorary one, in the near future. Yes, apparently I did test positive for the T790M mutation which would align with the clinical trial up at UCLA. I’m still awaiting word on further tests, such as the C-Met mutation, before any there is any action-Jackson. I may be be blogging again tomorrow for all I know with updated info. You never know with my situation, right?

So, a couple of weeks ago, while waiting for my biopsy results, I thought I would be extra romantic as my wife has been such a champ in holding down the Blower family fort. So I impulsively texted her:Love to death

OK, let’s just say I did not think through my choice of words too carefully. I thought I was being really romantic, and she was sure I was making reference to some really bad test results that I didn’t want to tell her about. I’d like to say this was the first time I knuckle-headed an attempt at romanticism, but ask me some day about a Valentine’s Day long ago where I left my wife in a puddle of tears on the floor because I carried a prank way too far. Some people never learn. The fact that she is still married to me sometimes amazes me. OK, always amazes me.

Saw a re-occurrence of my chest discomfort this past weekend which prevented me from sleeping on my bed because it was too difficult to lay flat. Also opted to be cheerleader/scorekeeper at my softball game as I didn’t want to push my luck. “Got” to sleep another few days on my new recliner. I must say, it was a decent night’s sleep. Finally yesterday I was able to return to my bed. And right now I am planning on coming off the DL for our Sunday Father’s Day softball game. But we know how things change, don’t we?

Still coming down off the high of my daughter’s wedding. Can’t wait to get some of the formal pics to post. As many of you know, at least those of you on Facebook, the father-daughter dance was “Happy” from Pharell Williams.  Very fun!

OK, another blog should be coming in the near future with an actual game plan. And I have a bridge to sell you…

Business as usual. Day at a time.

June 2, 2014 (Mon) – The Wheels on the Bus Go …..

…round and round.school-bus

Or flat. Or they come off entirely. Or someone gets thrown under the whole kit and caboodle. I was just waiting for an opportunity to use that phrase which, unless you are at least 50+, probably have no idea what I’m talking about. Then again, I’m not sure I understand its origin. But suffice it to say, all of the above have happened in the past couple of weeks. But when the wheels go round and round, they’ve been mostly spinning in place a la a speed odometer testing track.

stabbed in backSo last you heard from me, I was waiting to get stabbed in the back. Couldn’t find a decent clip art for an actual lung biopsy that wasn’t too graphic for prime-time so you will have to live with the non-pc knifing version to the left. My lung biopsy went without hitch on Friday the 16th. That was after one of the technicians finally found me because the computer apparently had me located in a whole different side of the hospital. But I’m so glad it wasn’t on the 13th again. That date has not worked well for me. And I’m also glad I was not one of the ten-percenters that suffered a lung collapse during the procedure which would have put me in overnight. As it was, it was an all-day ordeal having to wait 3-4 hours afterwards to ensure no lung leakage. hsssss… Originally I was told I should expect about a week before my test results, hopefully indicating which of the two clinical trials I might be eligible for. Remember that time frame.

Because I am working with two separate medical facilities, Sharp, my home club, and UCSD, a possible site if indeed I test positive for the C-Met mutation, it gets a little tricky in terms of insurance, permissions and access to test materials and results. In order for them to have sufficient lung tissue samples that Sharp can send out for one mutation test, and UCSD can get a piece of me to send to their lab, Sharp had to conduct the biopsy. So my onc-doc at Sharp was the one who scheduled the procedure. Otherwise it would have taken a double-stab. And I won’t subject you to that graphic.

On Thursday, the day before the biopsy, I e-mailed my onc-doc at UCSD to let her know that my biopsy was scheduled for the next day. On the following Tuesday, I received a call from her assistant reminding me to let them know when my biopsy got scheduled. Deja vu all over again. I quickly straightened her out and proceeded to enlist my patience in waiting for the test results which I expected to receive by that Friday (the 23rd).

I know you are not going to believe this, but I did not hear by that Friday. Yeah, floored me as well. Not. So I e-mailed my Sharp onc-doc over that weekend as a reminder to let me know about the biopsy test results. I knew that Monday was a holiday and I would probably not hear from him but at least he would have the e-mail when he first got in on Tuesday. And I had my regular monthly appointment with him that Wednesday the 28th.

On Sunday the 25th, my wife left for San Jose (driving) to help out out with my daughter’s wedding preparation. chest_painAnd to take up all of my daughter’s stuff accumulated over the years now that she was officially hitched. The wedding was last Friday. More on that later. But overnight on that Sunday, I began to feel more uncomfortable and short of breath as the evening progressed. When I woke up on Monday (Memorial Day), I added sharp chest pains to that mix. So, what would you expect a lung cancer patient, with increased difficulty breathing, with sharp chest pains, to do, especially with nobody home? Call a neighbor? Call 911? Drive immediately to the ER? Nah. I went to work. Hey, it’s budget season and I had important stuff to do.

head-in-sandI was trying to keep my head in the sand because I did not want to know about anything that might preclude my being at my daughter’s wedding last Friday. It took about 4 hours for smarts to catch up with me. As I was leaving work at noon, I Googled “lung collapse symptoms.” Yup, I had every single one. And I was a bit worried that this is what I was facing, especially after having a partial collapse to begin my whole journey with over a year ago. And I knew waiting another 5 days, if that’s what it was, would not be a good thing. So I stopped by the ER on my way home.

hospital5This time I was flooded with service and attention. Too much attention. They tried to suck my blood 4 separate times, when they actually only had to do it twice. I had to send them away, otherwise I would have I run a pint dry. But two blood tests, an EKG, a chest X-ray, and CAT scan later, I was in and out of there in only two hours with a clean bill of health. OK, we know that is not true but they did indicate that there was no evidence of lung collapse or any other issue that would preclude my travel north. Thus I knew I was not going to tell my wife or daughter about my little ER stopover until at least after the wedding.  That is not something they needed to worry about that week. In fact, this post is probably the first my daughter has even heard about it unless my wife has spoken to her. I did end up sleeping on the recliner in the den that week since lying flat exacerbated (that word just sounds nasty) the problem. Since then I’ve been able to sleep flat and the symptoms have subsided somewhat.

OK, back to that week of my onc-doc visit. I called him the Tuesday morning after my ER visit to remind him about getting the biopsy results and to let him know that I had been in the ER the day before. Of course I had to leave a message as he was with a patient. And of course Tuesday is his half-day so, as you can now imagine, I did not hear from him.

When we finally got together Wednesday for our regular visit, I politely, well maybe not totally politely, unloaded on him about my disappointment in communicating with his patients. He apologized profusely but also indicated that he did not get my voice mail message although I had dictated it to his assistant who I heard typing it. Right or wrong, she is now squashed under that bus up above.

Test resultsAs for the biopsy results, apparently there are only two labs in the US (copyright and profit issues) that do the specific type of test (T790M) and one of them required too much of the tissue sample which would have meant I was in for a double stabbing. Since he guessed that I would not be overly enthused about that option, they went with the other lab that required less tissue and that would leave enough of my bod for the UCSD lab to have. But, these lab tests are being done to determine my eligibility for “experimental” clinical trials, thus insurance coverage was not a slam dunk. Apparently it took quite a few days to get all of the red tape covered to ensure I was not going to get stuck with the $26K cost per lab test. I was appreciative of that, just not the lack in communication in telling me that there was going to be a delay, and why. But I think we are finally clear on my expectations on keeping me informed. We shall see as I am supposed to know something by the end of this week. If I do not get a call by close of business on Friday, I’m gonna be pissed. That will be two weeks since my biopsy, 4 weeks since I got the word about my PET scan results, and 5+ weeks since the PET scan itself. In the meantime the fuzzies are feasting, at least in my eyes.

20140530_173756P1030543But I can’t finish my post on such a less-than-positive note. Last Friday my only daughter got married. Now that was some party. Probably the best wedding (not counting ours, wifey), I’ve ever been to. Classy but tons of fun. Here are a couple shots.

Business as usual. Day at a time.