Good news! Good news! I repeat, Good news!

actual microscopic image of my BRAF+

MEK being delivered at a cellular level
(my white blood cells wear body armor!)

I was just restaged last weeks after six weeks in the clinical trial on the combination targeted therapies of BRAF and MEK.  We knew the results would be good because all my palpable (fancy word for things you can feel with your fingers) tumors have gone away so there has definitely been some level of progress.  Now, I have not had any progress against the disease since I was diagnosed over a year ago.  None.  Every month or six-week interval has shown disease progression at varying rates, despite the very aggressive treatments we have tried.  These results from Moffitt would show for the first time that my level of disease has decreased, that I have become more healthy and less sick.  Level of disease can be measured by tumor load, and Moffitt adds the largest dimension of a select group of discrete, easily identifiable tumors.  For me, that's six tumors around my liver, in my lungs and upper torso.  When compared with the imaging study from the end of January, my tumor load has shrunk 61% in ten weeks!  The actual results are higher since the "before" imaging was when I was still on Temodar chemotherapy pills and before the significant cancer growth in February that almost did me in.  At that point, as the Marine saying goes, the enemy has us surrounded - and we have them just where we want them.  Then "boom"!
    Even better news was that my side effects from the targeted therapy have seemed to taper off at the lower dose (100mg instead of 150mg).  Now the side effects are minimal and I'm not at risk of being removed from the study.  And the rigor of my total treatment involves taking three pills in the morning and two in the evening and a day at Moffitt every month.  No wonder this combo therapy has become - as one doctor put it - the "phenom" in melanoma.  A low impact, quick acting, high response therapy for a disease that had almost no therapies with any one of those features.

     There is still the possibility the drugs will stop working at some point of course, but no one knows yet.  The good news is that the targeted therapies are coming on line as fast as the researchers can identify the specific genetic pathways that allow the cancer cells to regenerate.  As well, testing on combinations of targeted therapies with immunological therapies are just being started which promise to both knock-out cancer and keep it from coming back.  Its all very exciting and gives me hope of living a long and natural life, thanks to the miracles of science.  So hug someone in a lab coat today, and tell them thanks for me.
     While awesome news, we are trying to just live in the moment.  We are enjoying not having to deal with this on a daily basis.  I have some breathing room, some time, and I'm going to take full advantage of it.  We've restarted planning a summer vacation, I've committed to some new bike rides for the end of summer as I had to miss the ones I planned on this spring.  I'm setting goals and setting aside excuses.
     After holding the line for a year - my own little Battle of Britain - we've struck a mighty blow to cancer.  We've reduce it to less than half its former strength and the math for the next six weeks looks bad for cancer as well.  I am taking from it its ability to influence my daily life, relegating it to the far off battlefield.  And I have taken from it a renewed appreciation for these blue skies, for now void of black birds and storm clouds.
     Winning.

No Excuses

I was on the treadmill at the office, sweating a little too much and feeling the pain of various aches and pains and dragging from a long sleepless night, and I was feeling great.  I had come to a realization, somewhere about ten minutes into the workout that had - for some reason - escaped me recently.  I had set the machine for forty-five minutes, a normal but not too easy cardio workout before lifting weights and nothing extraordinary.  But once the machine started moving so did my rationalization machine, spewing a torrent of reasons why forty-five minutes was far too much.  I was up all night with a fever and then cold sweats. My legs hurt, and for some reason the bottom of my feet have been hurting the past week.  I need to get back to the office as soon as I can, that project waiting is urgent.  My therapist says I need to take care of myself, rest and take more pain meds and more Xanax to relive anxiety.  And I have cancer for Christ sake, stage IV - and that's really bad.  I should be able to do so much more, anyway, why try so hard to do what seems to be so little. It doesn't really matter. And I deserved a break.  I deserved a pass. I was special.
     That did it, that clicked a trigger in my brain that woke something up inside of me.  The tape loop started playing again, with that weird whirr as the voices and pictures got up to speed. I was suddenly that Marine recruit again at the top of the wall trying to get my leg over the obstacle, face in anguish from impossible pain, drill sergeant screaming in my face all the reasons I was a failure to humanity for not making it over this one obstacle.  I heard the voice of Winston Churchill saying "We do not do this because it easy, we do this because it is hard."  I heard Tyler Durden say "Without pain, without sacrifice, we would have nothing."  I heard that old drill instructor explain "When a Marine quits, he's dead." It's all about this one wall, and it has nothing at all to do with this one wall. This one challenge. This one little workout.
     I could choose not to, I have a fistful of passes that say I do not need to get over this one silly wall.  I'm justified to have those excuses, a lot of important and knowledgable people tell me so.  But that does not change what they are or who I'll become if I use them.  And although mine are pretty good I know others that have better ones but don't use them.  There are people much, much worse off than me who would give a body part to be able to spend forty-five minutes on a treadmill.  Unfortunately, there are those that can only dream of being able to do that before there miserable lives are crushed out like a used cigarette.  There are those that are better than me, that do not even think about plunking down their excuses but get on with life.
     So I took my finger off the down-arrow button on the control screen time setting.  I turned up the speed setting just one notch as punishment for being such a wuss.  I turned the iPod up just a little bit.  I started to focus on the thousands of times I pushed the excuses aside before and got on with it.  The school exams, the job challenges, the military exercises, the bike rides.  This is just another wall to climb, another challenge that will be over before you know it.  And when it is over, that challenge adds just a little something permanent and positive to all that I am.
     And, oh yeah, fuck cancer.

Hold Fast

OK, here's an update since my last treatment (hint, it didn't work).  Thanks to everyone for checking up on me and prompting more posts.  Let's review - so far in this fight against melanoma we've done biochemotherapy (the kitchen sink approach), the adaptive t-cell replacement of my immune system (the behind the lines infiltration), IL2 treatment (carpet bombing) and the Temodar chemotherapy pills (the cold war).  At the end of January I was restaged after four months on the Temodar and, despite some good signs at the end of November, the disease was continuing to progress.  Some new tumors appeared, including one in my skull that was building pressure in head which could lead to some serious consequences (a doctor actually described the situation as "deep do-do").
     Time for a new plan and I was still excited about anti-PD1.  A study opened up at MD Anderson but at a very low dose.  They held a spot for me but I wanted to explore other options.  Moffitt Cancer Center in Tampa had a anti-PD1 study that was pretty advanced.  When I called I found out that they had 1 spot left in the study for an Ippi-naive patient (a patient who never used Ipilimumab) and the anti- PD1 was at a high dose and it seemed like the slot had my name all over it.  So I set up a meeting with Dr. Weber there and filled out the thousands of pages of paperwork and bought a plane ticket.  When I got there they were a little skeptical of my previous treatment choices, but I think it was a lack of understanding as not all the facts are in the clinical notes they reviewed and, again, we are dealing with doctor egos.  But the new medical team was great, and agreed that the anti-PD1 study was a good and viable option.  However, the medical team there also recomended a clinical trial combining the genetic therapy drug BRAF plus the MEK genetic therapy drug.  BRAF is know to have good results in reducing tumor load and has been shown to increase life span by about a year.  After that most people's cancer mutate to a resistant strain that does not respond to BRAF, or any other know treatment.  Because of that most patients do not see their second year, and that's why we kept it in our back pocket as a last option.  In addition, BRAF had some serious side effects with rashes, fevers and additional cutaneous cancers.  However, the combination of BRAF plus MEK did not have these side effects, no one knows why, and may not create the resistance that BRAF alone creates.
     After talking to MD Anderson and some soul searching, we decided on the BRAF+MEK study because we needed to address my not inconsequential tumor load and we're weren't sure we could wait the 4-6 months for an immunological drug like anti-PD1 to take effect.  Plus, its pills twice a day and monthly visits back to Moffitt so a relatively easy regimen given what I've already been through.
     First, we would have to be off of Temodar for 4 weeks before we could start the trial because you generally need to be "clean", which is cancer speak for no cancer treatment and generally no medication for your symptoms in your system that may interfere with the results of the trial drugs.  We figured that this time frame would help us decide one of three things about the Temodar - that:  1) the Temodar was working by holding down the growth of the cancer if we find that, after a month, we have a more aggressive disease progression or 2) that the cancer is progressing slowly on its own regardless of the Temodar if the disease progression over that one month window remains slow or 3) that the Temodar was actually inhibiting my body's (and my new immune system's) ability to fight the cancer and we see a decreasing tumor load after coming off Temodar.
     The third option is the one I held out hope for although the medical team at MD Anderson expressed skepticism.  I figured the second most likely - that Temodar was not doing much at all.  This was not a bad result, if the tumors grew slowly or stopped I could go on with the rest of my life just having the tumors along for the ride but not hurting me in any way.  This was what I was banking on.
     Well, the result was actually behind window number one.  After two weeks I did not feel better being off the chemo, in fact I felt much worse.  By the third week things were getting pretty troubling and my level of pain and general suckiness was growing daily.  In fact, this was the first time I experienced pain from the cancer - up to now all the side effects were from the treatment and not the disease.  And pain is not quite the right word for it, although there was definitely a lot of pain and I had to resort to increasing levels of pain killers to get through the day.  The feeling of the cancer is a kind of hollowness in your bones, like your gut is full of broken glass and you're all busted up inside.  Moving is something best avoided and I had to stop any kind of exercise.  And each day got worse as I tried to hang on without treatment for the remainder of the four weeks.  Every morning brought a new level of pain and tumors started to visibly grow and I even got black eyes from increased pressure in my skull along with headaches and numbness in my extremities.  But pain means you're still alive and I fought through it.  Needless to say, Ann and I got pretty scared.
     As this was happening, the amazing research nurse at Moffitt managed to get all my tests scheduled in order to get me hopefully cleared to start the trial as soon as possible.  On day 29 I was at Moffitt a third time getting my final tests, and then I waited in a nearby hotel for the call that GlaxoSmithKline had accepted me into the study.  There were some sticky points and they did not like the tumor in my eye, we all worried that might make me ineligible for the trial.  However, the next day, February 29th, I got the call and headed over for my meds, taking the first dose at 2:30pm.  Unfortunately, I had a very important business meeting the next two days that I had been planning for over a year that involved flying to the Caribbean overnight and I had to cowboy up for that.  But I didn't get much worse.  By day 4 on the drugs my most obvious tumors had either shrunk or disappeared, especially the cranium lesion which was completely gone.  Ann and I managed to take a weekend to ourselves, although I do not think I was much fun to be with.  The headaches subsided, the pain slowly faded and by day 5 I was off the painkillers and anti-nauseau drugs.  By day 7, my first check-up at Moffitt, I was a new man and I didn't feel cancer sick any more .  By the 10th day I was able to go to Disney with the family and walk through the parks with the kids without wincing.  By day 12 I was back on my bike, and on day 13 I hit the gym again.  Hey, cancer!  Say hello to my little friends BRAF and MEK.  I think this has been a neutron bomb up cancer's ass and an amazing, beautiful thing to watch.  There have been some side-effects, fevers followed by major malaise (a term I used to joke about but no more), but nothing too bad.
     So I should be overjoyed, dancing in the streets and shouting at the moon but it's hard to ignore the dark lining in this cloud.  The anticipated developed resistance to the BRAF drug experienced by others is a definite possibility and can hit me tomorrow or next week and most likely within a year.  No one knows yet if the combination of BRAF and MEK somehow overcomes this resistance.  Medically speaking, there is no reason to expect it to do so but there is also no known medical reason that the combination works so well over the BRAF alone - as I myself have experienced.  We are in uncharted waters, hoping for the best and keeping an eye out for monsters.  Dr. Weber is presenting the results of this study at ASCO this fall, perhaps they will know more then.

     But for now we're victorious, although bloodied, after the challenges of the past month.  Cancer broke through my defenses, breached the wall and made it into the keep.  I fought back and won back my body, that's all that matters.  Live to fight another day, that's all I ask.  But it left an impression and I can still see cancer's tracks in my home.  I have now seen cancer up close, felt its breath in my face, its hands around my neck.  While I can not deny the fear I felt in the encounter, I also feel a stronger resolve.  I feel the adrenaline after getting hit in the face the first time in a fight, the laser sharp focus of survival and the taste of my own blood in my mouth.  I've beaten it down and I can do it again.  For now I'll rebuild my strength, reinforce the fortress and really, really enjoy each and every day.  And we'll keep hoping that the boys and girls in the lab develop some new weapons for me in the next year.  That's no pipe dream, there have been more melanoma developments in the past two years than the past twenty.  Until then - we hold.