shiner time

To my brother who has successfully completed all six rounds of chemotherapy, may your tumors suffer the same fate as this beer.  Sláinte mhaith!

off the reservation

     Last round of chemo.  I can only imagine how my brother feels to be finishing with it.  I think it's a mixed bag for him.  On the one hand, the doc stated, "you should be quite pleased, your cancer is responding to the therapy like I haven't seen in a lllooonnggg while."  The bone lesions show evidence of repairing and on the PET image of the primary (and secondary), even I could tell a big difference between the before and after.  But it vexes my brother that no cures are proffered.  And so I've thought a lot about what can come next.  According to current wisdom, conventional therapy offers no cures.  So at what point does one begin to go "off the reservation" with respect to therapy?  Usually that statement is reserved for those going off into the hinterlands of insanity.  But when one knows the limitations and outcomes of the conventional route, to me it's the sane man who ventures off into those hinterlands. 

     Being uncharted territory, it's littered with anectdotal and hyperbolic claims, many of them almost predatory playing on the hopes and fears of patients.  My research background helps me be able to sort through that bs pretty quickly.  But I also keep telling myself to keep an open mind.  Spontaneous remissions do occur.  How or why is open to debate but discoveries, especially the really big ones, are more often than not when a prepared mind happens upon a chance finding.  I watched it happen enough to know when to follow my gut.  But it's hard to wade through it since the research is so personal.

     It's also a function of how much the patient is willing to embrace.  I can't imagine my brother going off and becoming a hardcore vegan (not that I recommend that).  The negative impact on his quality of life would preclude him from following it.  So we start incrementally.  We start with things that A) have a reasonable chance of helping and just as importantly B) do no harm.  His chemotherapy regimen has granted him an enormous gain and that needs to be honored and not undone.  So first the easy and safe things.  Green tea.  Pomegranate. Broccoli.  Fish oil.  (I'm not going to review the literature on each of these here but I'll probably do it later if I get around to it).  Now that the chemo is done, we'll probably now add curcumin and some other things once he's recovered from this last round.

where they make the assholes

Scene 1

My wife and I are walking down a long skywalk bridge which connects two MDACC buildings.  On one side is the pedestrian pathway.  On the other is the path for carts shuttling patients back and forth who have difficulty walking.  The path narrows down and like in traffic, the natural thing to do is to zipper when merging.  A doctor rudely cuts off my wife and runs into her handbag.

Scene 2

My brother, my mom and I are walking down the same skybridge the next day.  Up ahead are two doctors conversing.  They are standing in such a way as to block the entire pedestrian pathway.  I quickly relate the story of my wife's experience and state matter of factly, "watch, they will make us go around them and go into the cart path."  True to form, the god-like beings force us mere mortals to go around them.  Behind us is an elderly and feeble woman in a wheelchair.  My brother states, "if they don't move for the elderly minority woman....that's just sad."  They break up their conversation before the wheelchair bound woman makes it to them but I have little doubt that they would have remained steadfast in the knowledge that their discussion outweighed any inconvenience the elderly woman would have encountered by having to move.

As we're driving home, we pass my school and I point it out to my wife.  Her reply? 

"That's where they make the assholes."

Doctors don't do themselves many favors when it comes to dispelling the accusation of having a god complex.

battle

Battle = Biomarker-integrated Approaches of Targeted Therapy for Lung cancer Elimination.  Approaches like this is one of the major reasons for driving us towards MDACC.  It's a rather innovative way at conducting clinical trials.  The standard way of looking at new therapies is take a thousand patients with lung cancer and say half get treatment A and half get treatment B.  The problem is that not all lung cancer patients are equal and at the end of the trial, the primary endpoint would often be missed (translation - expensive failure) but in further analyses it may be found that one small percentage may have benefited.  Then one would have to conduct another trial and look at those patients and so on.  At the end of the day, it has not lead to much progress in lung cancer.  This approach hopes to change that.

     They biopsied non-small cell lung cancer patients (NSCLC which is what my brother has) who had already undergone chemo and assessed the tumor for 11 different mutations or particular markers.  The first round of initial patients were randomized to one of four different experimental therapies that would inhibit molecular pathways thought to be important in cancer biology.  The goal was to find out which therapies worked in which markers, or just as importantly, what therapies would not work in certain patients.  After the first round they would then engage a technique called adaptive randomization.  It's a bit like artificial selection in medicine.  If patient with markers A, B, and C responded to Therapy 1, then the next patient who came along with markers A, B and C would be nudged towards that same therapy.  Likewise, if the same patient responded horribly to Therapy 2, the next patient would be nudged away from Therapy 2.  It's an iterative process that moves away from a shotgun approach and instead allows for a system to adapt and improve through a darwinian process thereby minimizing costs and failures.

     So how did it work?  First, it showed that a targeted trial using adaptive randomization could work (also see I-SPY for breast cancer) which was not a foregone conclusion.  I suspect that this will slowly but surely begin to change the way cancer trials are conducted.  Second, since these were end stage patients who had already undergone the usual therapies, the primary endpoint was 8 week control of the disease (that means that the tumor had maintained size or shrunk after 8 weeks by imaging).  Historically, that would mean about 30% of the patients would meet those criteria after 8 weeks.  With this approach, it reached 46% which is not at all trivial in very sick patients.  And since they collected good biopsies, they and other researchers can go back and further probe the biopsies with new information and newly discovered mutations.  Now the plan is to take the information learned and go into a BATTLE 2 and BATTLE 3.  If you want more nuts and bolts about the mutations and therapies, you can click here (listening to one patient who was 37 and a triathlete was very poignant).  If you want to listen to a podcast with the clinicians and two of the patients enrolled, you can click here or you can find it iTunes here (it should be podcast #17 with BATTLE in the title).

     I walked away with two distinct impressions.  First, when asked about some of the pragmatic results that can be immediately applied to oncologists, the clinicians stressed the importance of high quality biopsies.  As I look back on my brother's experience, I can attest firsthand to the inadequacy of biopsy harvesting at other institutions (they screwed up the first one which still makes me furious to this day).  The second was something I came across on the web.  Since I haven't yet had a chance to discuss the results with the doc, I perused around a lot on the web reading other oncologist's opinions and thoughts about it.  I came across this forum where an oncologist gave this assessment of the trial which I found amusing:

I think they are encouraging and provocative and show the feasibility of a concept for which feasibility was actually an open question....Part of what he's talking about is that MDACC trials often have highly motivated patients so they can produce results that others may not be able to.  The other is that the comprehensive nature of care there is so wide and cutting edge that it dwarfs many other institutions.  And for both of those reasons, it feeds me hope because my brother is a highly motivated patient and the quality of care he has received there has been top notch.

health wednesday

(I'm a day late but oh, well.)  When discussing food around the table, I'm like a parrot.  "The only dietary pattern with good clinical data relating to meaningful endpoints is the Mediterranean diet."  Everything else is just hypothesis generating in my book.  The ADA (American Diabetes Association) is having its big annual meeting right now so lots of interesting stories are coming out about diabetes.  One in particular caught my eye.  The hot topic is to reduce carbs.  The more nuanced scientific question is, replace them with what?  It would seem to suggest that replacing carbohydrates with any old protein source is not the way prevent diabetes. An observational study of roughly 40,000 men found that men with low carb intake and high red and processed meats had a higher rate of progression towards diabetes.  Granted, this is an observational study but it drives home the point that just because something medically makes sense, doesn't mean it'll be true.  Glucose dysregulation causes diabetes.  Eat less glucose, get less diabetes.  It's more complicated than that.  The medical community and society at large went whole hog into the low fat territory and it simply did not reduce disease in any meaningful way.  Before we go off chasing our tail again, we should rely on data from meaningful clinical studies.  And right now, the Mediterranean diet is the best game in town.

liveblogging - restaging

restaging - the process of assessing the current state of the disease, often involves (re)assessing the size of the primary tumor.  The status of pain is also a good indicator.

8:30 pm Thursday
Chemo is done.  I have to say that my brother looks far better than the last round.  Don't know if that's because it's 8:30 pm rather than 2:30 am, the fact that he knows there's just one more, or the fact that the acupuncture did something different this time.  We'll see if that continues the next few days.  Only one more round to go.

1:20 pm Thursday
Chemo has finally started.  I guess I can't really call it 'liveblogging' when it ain't live but I've had a horrible time with their wi-fi.  None of our laptops would connect.  My son happened to connect his i-touch to text his girlfriend, though.  Hey, gotta keep one's priorities straight.

I hesitate to comment on the scans because I'm not sure I really understood the report.  That's a direct function of the doctor not even knowing what was in the report.  It looks like the peripheral lesions (liver, ribs, etc) may be going away.  In the bony structures, it looks like there is some healing....well, something is replacing the metastatic cells anyways.  Even fibroblasts would be better than carcinoma cells at this point.  The primary shrunk a bit more which is good news.  My hunch is that with the peripheral mets controlled, after the 6th round, the doc may go in with radiation to clean up the primary and secondary tumor in the chest cavity.  But we'll have to wait another 3 weeks before we get anything more definitive.

11:15 am Thursday
Just got out from the doctor and I learned another valuable lesson as a physician.  If you're covering for another doc while they're out on vacation, make sure to spend more than 30 seconds reading the chart.  I was, shall we say less than pleased at the guy filling in for our regular doc who was out on vacation.  He basically said, and I'm not kidding, "the scans look good and we're going to keep going with chemo."  When asked to define "good" he gave a rambling non-answer and handed us the preliminary path report.  After reading it once, I knew more about it then he did.  Pitiful.

10:30 am Thursday
Our appointment was at 9 am which means we're still waiting for the doc.  It's like a commercial for apple here.  The kid in the middle is my brother's and the one on the left is mine.

4:30 pm Wednesday
Here's his third eye after acupuncture.  Funny side note.  I started to talking with the acupuncturist who happened to be a MD from China.  She was telling me about the different meridians and came to one near the shin that supposedly was associated with longer life.  I asked her if she utilized that point on herself.  Her response?  "No, I'm too lazy."  I guess both eastern and western physicians all take horrible care of themselves.

12:40 pm Wednesday
It's a bit like the military here.  There's way too much red tape.

There's a lot of walking from building to building (the place is massive).

There's a lot of hurrying up and waiting.  Everything seems to be running on time today, though.  We're waiting on his PET scan to finish and then we can grab some lunch before he goes to get his acupuncture session.

12:00 pm Wednesday
The chest x-ray is complete and now we're waiting for the PET scan.  For reasons that aren't entirely clear to me, he's not having a CT scan.  He's glad because that'd mean an IV.  He's sick of needles.  Here we are, me cussing at machines, because neither one of us can get our laptops to connect to their wi-fi.  I can see the router hanging on the ceiling 15 feet away and yet it won't connect.  So I adapt and go with the common use computers.

11:08 am Wednesday

Bloodwork is the only thing that moves quickly here.  He's done in 4 and a half minutes.

10:00 am Wednesday

We head down to the med center to get the bloodwork and imaging done in preparation of the doctor visit tomorrow.

6:50 pm Tuesday

Heading out the door to meet my brother and his wife halfway to Dallas. I then bring him back down to Houston to spend the night.

review - to kill a mockingbird

Synopsis - told in the deep south during the 1930s the book is both a story about loss of innocence as well as the racial inequities of the time.  The loss of innocence in part comes from the protagonist - a young headstrong tomboy dubbed "Scout" - her brother and their friend as they witness their dad's (Atticus) able but ultimately doomed courtroom defense of a falsely accused black man.  The three children believe in the noble spirit as well as the ability to always appear calm and right headed nature of Atticus, and so believe surely the man will get acquited.  He does not and is sentenced to die for his crime (sexual assualt of a white woman).  The courtroom tale parallels the childrens' own incorrect accusations towards a mysterious neighbor who ultimately saves their lives.  There is no happily ever after in this tale but it is not without hope.  One gets the sense that the children learn that life is brutally unfair yet there are good people in the world willing to stand up and do what's right.  And that someday, they will be the next adults who stand up to do the right thing.

Medical relation - I couldn't really tie anything into this medically other than the personality of the father, Atticus.  He's level headed and almost caring to a fault.  He defends the black man knowing full well the predetermined outcome but does so because he sees him simply as a human being, no different than anyone else.  Qualities for a good lawyer as well as a doctor.  The man reminds me a bit of my father now that I think about it.

Conclusion - I immensely enjoyed the writing style.  It's written in a southern prose which I've come to appreciate over the years.  The characters are extremely easy to relate to and as I read it, I could even picture the scenes happening in mind feeling like I knew the characters.  That's the mark of a good writer when it's like a movie playing in your head.  The other thing that struck me was how far society has come.  The book took place in the 30s and was written in the 60s.  Not exactly high points in society's treatment of people that didn't happen to have the right color of skin.  I look around my own life where growing up I had friends of every color and never thought anything of it.  Today I look at my class and again, see lecturers and students of every color and think nothing of it.  Politics aside, our president was elected without any issue of race coming up too overtly.  So while individual stupidity and racism will always exist in any society and any race, I think from a sociological perspective, our society has moved past the point of institutionalized racism.  That's a hopeful thing to know that things can change.  It makes me almost (but not quite) hope that we can correct our unsustainable path to health care that we're headed down.