You 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 outside 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 the 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.
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.
So 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.
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 my 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 one 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.
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.