A Little Good News - And Another Pivot

Laura and I met with Dr. Noonan (oncologist) today, and she said:

• The CT scan a couple of weeks ago showed no growth in the single tumour (15mm x 18mm). More significantly, no new tumours anywhere else.
• The heart MRI I had last week showed myocarditis (swelling of the heart). All the other heart tests while I was in the hospital showed relatively normal (for me).
• This was most certainly caused by the months and months of nivolumab and Keytruda (immunotherapy) I had been on. This affects about 1% of people.
• She put me on a couple of months worth of prednisone to handle the myocarditis.
• Dr. Noonan stopped the combination chemo/immunotherapy. We may come back to it months from now, but as of today we have another avenue to travel.
• We'll re-engage the radiation team to see if they'll take me on - we know that the chemo had adverse effects, and the tumour appears stable (two things they talked about with their previous decision).
• Laura suggested that, if the radiation people decline, we should ask Dr. Wong (my urologist surgeon) if he'd take a crack at it. 
• I never pass up a chance at major surgery.

Addendum: It's a day later, and I just visited my cardiologist. He confirmed the diagnosis (myocarditis) but made several changes to my meds:

• Removed the blood thinner (only needed for a year IF I had a stent installed - which I didn't).
• Removed the prednisone - said that mild myocarditis should resolve on it's own if the source/cause is removed. He's checking with Dr. Noonan regardless.
• Update: Got a call from my cardiologist - he consulted with Dr. Noonan and they agreed to continue the prednisone - evidence to suggest it's helpful with PD1-Inhibitor caused myocarditis.
• Cut the beta-blocker dose in half. Heart rate is now too low. And I'm dizzy. So there's that.

Oncology Conversation...

I was discharged from RCH at 11am this morning, and had a call with Dr. Noonan (Oncologist) this afternoon. She had just reviewed my file with all the latest, and before I even brought it up and she's going to:

1. Remove Keytruda from the trial altogether. If there is a chemo connection, that would be it. (She went to that explanation really quickly, which tells me there's something she knows that cardiology doesn't.)
2. Pause the treatments for a month. Restart in October.
3. I will get a CT next week, so we'll discuss the results before the treatments would restart.

So next steps are wait to see what the CT says. Then pivot. Like we always do.

PS: Alan found this NIH paper: "Cardiac Toxicity Associated with Immune Checkpoint Inhibitors: A Systematic Review". Keytruda (pembrolizumab) is a PD-1 checkpoint inhibitor. Notably,  Nivolumab is as well.

PEOPLE SAY THIS IS THE BEST RETRACTION EVER

 I was wheeled into the cath lab (for my angiogram) at 2pm this afternoon. I was really concerned, not for the procedure (been there, done that) but the outcome. 

Normally, because you're conscious for the whole thing, I have a banter going on with the surgeon and the whole cath lab team. This time, I was obviously stressed, and I didn't really say a thing.

At the end of the procedure (about 20 minutes) Jay the surgeon says "OK, I'm stitching you up now".

"There were no new blockages, the stent I put in 8 years ago looks good, and so does the bypass from 2006. I found nothing to be worried about".

So I can take all the heart anxiety off the table. Although they are keeping me in the hospital overnight to monitor and discuss what they think might be going on.

THANK YOU FOR YOUR ATTENTION TO THIS MATTER.

More Info: Spoke with the cardiologist this morning (Sept 4) and after reviewing the surgeon's notes from the angiogram, he believes this was indeed a heart attack in a small, unstentable, vessel near the bypass location. 

More More Info: See the post of Sept 22 to find out what this heart thing really was...

Didn't see that coming.

We've had an emotional couple of days.

Round #4 was completed last Tuesday, and as predicted the sessions are cumulative in their effects on me. I managed to go across the street to Safeway on Sunday afternoon, but that was about all I could handle. I went to bed Sunday night (Aug 31) feeling pretty tired, but nothing really out of the ordinary.

An irritating discomfort (I won't go so far as to call it pain), was radiating across the top of my chest and down both arms. It was enough to cause me to get out of bed. I went to the living room, sat for a minute, and decided that Laura should probably call an ambulance.

So off we went (again) to Royal Columbian Hospital. I was there from about midnight Sunday/Monday, and I'm still here as I write this. Yesterday afternoon (Monday, Sept 1) we met with the on-call cardiologist and he explained things as he saw them. Note that this might change, but I think the big picture will remain the same.

When I came into ER, my Troponin (blood enzyme they measure to see if there's something stressing the heart) was 21. Normal is considered under 20, so no big deal.

But they measure it twice - again a couple of hours after the first one - to see if the event is done and the levels have changed. When they measured it again it was 571. Something happened.

The thing that happened was a heart attack - exactly when I don't know - but a heart attack nonetheless.

It was likely caused by the combination of the Keytruda/Padcev trial I was on (heart muscle damage is a reported side effect of Keytruda) plus my preexisting heart history. (EDIT: The cardiac team investigated the chemo drugs - the chances of them being the culprit are about 1% - so it's more likely just plain bad luck.)

When the cardiologist looked at my previous bypass and stent, his best guess is that the major artery I had bypassed in 2006 has narrowed significantly - when they looked during a stent job I had done in 2018, it was 40% blocked. 

But we won't really know until an angiogram, which will take a detailed, real time, picture of all the vessels in the heart (if you've never had one, they are really cool).

So this is another fork in the road. Now that I've had a very serious side effect of the Keytruda/Padcev trial so I can no longer continue. Duh.

But I do want to know if those 4 rounds did anything. I have a CT scheduled for next week, which I doubt I'll be able to make, but maybe we can wrangle something in this hospital while I'm a resident?

There's another interest in the cancer CT. It will play a big part in determining what I do next. If indeed that old bypass is failing, I'd need another bypass - which would be really dangerous with a man with the health history I now have. The DNR conversation has already started about this one. 

If the CT shows the cancer has spread, maybe I take my chances with bypass. But I'm getting too far ahead of myself here - there's still two things that need to happen so we can make an informed, pragmatic decision on how to move forward. CT and angiogram.

So there you have it. I sit here all hooked up to instruments. A heparin drip 24x7 beside me. About a dozen blood tests and 4-5 EKG's every day. Waiting to move upstairs to Cardiology.

The family is holding up well. Don is over here from the Island, Laura is the trooper she always is (the bigger the crisis, the stronger she gets), Kath slept in a hospital chair all Sunday night, and is juggling the start of a new school year, a son in Grade 1, and a sick dad.

More news as it happens.

Party on Garth!