This week: Patient #1 reaffirmed the need to be his own advocate

For those of you who like to cut right to the chase, here is the short and sweet update.  We are on to Plan B, starting Friday, and I have been randomized into the treatment group – that’s the one that gets the trial drug, in this case, Merck’s PD-1 antibody.  The entire family exhaled; we will stay in Fort Lauderdale, be able to continue diet and nutrition adjustments, and get our preferred treatment.

This comes just in the nick of time, literally.  I ended up in the hospital for two days with stomach pain and vomiting.  The doctors couldn’t seem to find an obvious alternate clause, so the assumption is that the liver and spleen tumors are putting pressure on the intestine.  I still think a combination of things helped put me there – overexertion, not staying hydrated, and some bean soup – but the CT scan I had showed the tumors are still growing and no other obvious signs of blockage.

The last few days had its share of emotions; finding out we got the PD-1 was the final hill of the roller coaster, but certainly not the only up and down moment.  I thought the week would start with us finishing the trial enrollment process, instead of it ending that way.  Rather, it began with potentially avoidable delays (including one I was responsible for by not getting the scans from Moffitt on Good Friday when I should have) and led to my cleaning out the garage with my buddy Jax.

Tuesday night, after being tired both Monday late afternoon and Tuesday after dinner and the garage cleanse, I got serious pain in my stomach.  Hoping it was just an effect of overdoing it and maybe being a bit thirsty, I tried to tough it out and see if the pain would go away with some rest.  Then, dinner decided it wasn’t going to stay down, so we uprooted the kids after midnight, brought them over to my in-laws, and checked in at 1am to the Holy Cross ER.

Nearly 5 hours later, I FINALLY got some sleep after having a bunch of tests, scans, and sleep-inducing painkillers.  In between doctors poking their heads in (I almost slept through one who left the lights out while talking to us), Jen and I both gave in to a bit of exhaustion and got shuteye.  The roller coaster continued all day Wednesday; I was put on the “nothing by mouth” list in case they wanted to run more tests – a frustrating semi-necessity that goes against two firm beliefs: good planning and a balanced diet.

There was also some misunderstanding on the Holy Cross team as to the next steps, and a somewhat contentious conversation between the lead oncologist and I regarding the delay and who was responsible for pushing this along. We got multiple conflicting answers to our question about the next step and where I stood in the process of being enrolled.  There were friends of friends asking around Merck (the PD-1 drug manufacturer and study sponsor) to see if they were unnecessarily holding this up.  Being in the hospital without food or drink is frustrating enough; feeling as though the ball is being dropped by professionals you are trusting with your life is slightly maddening.

Tangent – I mentioned this last week, and will probably do a full post on it at some point, but this week just reaffirms the need to be your own advocate when it comes to medical care.  While I don’t necessarily care whose fault the holdups were, it mattered significantly what was being done to address said holdups and when we could expect an answer.  I don’t know if the medical community is used to the patient holding them accountable to next steps and date commitments, but also don’t really care if insisting on answers ruffles feathers.

This week, we ran into a team that doesn’t have the experience of a large cancer center who navigate through multiple trials all the time.  My guess is they are also understaffed for what they are being asked to do, at least to the level of commitment necessary to kick off a new trial.  Neither was acceptable as reasons they (and we) were not on the same page or could not produce actionable answers when pressed for details.  It is a bit of the squeaky wheel getting the grease, but was also letting everyone involved know we were not just taking pat answers and waiting our turn. If you’re not projecting your care as the utmost important thing, it’s unfair to expect someone else to make it their top priority. In other words, make it your priority, and insist on your doctors making it theirs, too.

Regardless, the up and downs with the trial team gave us pause and led to quickly assessing other options (and letting Holy Cross know that – not sure if that helped move things along or not).  Ultimately, we decided that staying with our initial gut feeling was the best way to go, especially since it offered us the treatment we wanted more quickly than anyone else could.  That faith was rewarded with the luck of the randomization draw and avoiding the chemo control group; I would like to thank everyone who prayed, offered special karma, and/or hacked into the Merck online randomization system to get me the trial drug.  (Note to the FDA – I’m kidding.  It’s not like I went to college with bunch of CMU computer science geeks or anything.  Nothing to see here… move along, move along…)

Next week, more details about PD-1 and what the trial entails.  For now, it’s time to get a little rest, reduce my activity level, catch up on some non-physically-stressful house stuff, and make slight diet adjustments to ensure I stay out of the ER.  We got through a turbulent week, but the big battle is just beginning, and I need to be ready.  Now, time to check if there are still good seats available at Marlins Stadium on Sunday – this won’t be an issue based on the Marlins’ track record.  Roy Halladay is on the bump and I am taking my kids to see their Phillies play.  Besides, I said “reduced activity level,” not “underexert myself with extreme caution.” That’s just not how I live – and will continue to live while PD-1 does its thing.  Look for the actively-treated melanoma patient in red on PHL-17 Sunday; it’s time for us to “play ball!”

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »