Surveillance

 

I've had three CT and one PET scan in the last six months and they all show a tumour near my left pelvis that is about 18mm x 15mm.

I met with Dr. Noonan and one of her residents today, and we talked about where I am and what's on deck for this E-Ticket ride of mine.

The oncologists and the radiologists all had a star chamber consult about my case, and their decision was for me to enter "three month surveillance". The tumour appears to be stable, and so something is happening (or not happening) - whether it's the immunotherapy (nivolumab for a year, and then four rounds of pembrolizumab), or it's the four rounds of EV (entfortimab vedotin). Or it could be my dazzling personality.

The radiation people said they won't do anything unless they see a change in the tumour (grows). 

The oncologists say that further immunotherapy is off the books because of the heart damage (myocarditis). They don't want to put me back on systemic therapy until there's a reason to do so. If the cancer metastasises beyond where it is now, EV is the chemo/drug of choice.

So for now, I'm feeling quite good being off all the drugs (with the exception of prednisone, which I'm currently weaning off). My energy is coming back, and one day soon I'll try another bike ride. 

PS: Just got the call, and my next CT is scheduled for Jan 28/2026. Let's hope it's clear sailing till then. 

Happy Thanksgiving - and an update

Happy Thanksgiving everybody! 

Dave is home from Korea and I thought it might be easier to explain to his friends what's happening to me by pointing to a single blog post (this one). It'll also serve as a Coles Notes version for the whole sordid affair (so far).

• Noticed blood in urine in May 2023.
• My GP referred me to a urologist (Dr. Wong), who did a cystoscopy in July and a TURBT in August.
• The TURBT confirmed I had high grade Stage 2-3 urothelial bladder cancer.
• I went on cisplatin/gemcitabine chemotherapy Oct-Nov-Dec 2023 in preparation for bladder removal surgery (radical cysectomy) at the end of Feb 2024.
• The pathology of the removed bladder (plus prostate, plus lymph nodes, plus other miscellaneous parts) showed that the cancer had spread to at least one lymph node.
• I started on immunotherapy (nivolumab) for a year - ending in March 2025.
• After a year, a PET scan showed that there was a tumour/mass - about 2cm x 2cm - in my lower left pelvis.
• Options are limited, so I was enrolled in a trial for a combination of drugs (enfortimab vendotin and pembrolizumab). 
• I completed four rounds of the combo therapy (immunotherapy plus chemotherapy). 
• After round four, I had unexplained chest discomfort. Bad enough that it caused me to have Laura call my driver (ambulance) and take me to the hospital.
• I was checked out (including angiogram, MRI, ultrasound, ultrasound) and determined that I had immunotherapy induced myocarditis.
• The myocarditis has caused us to stop the combination drug trial completely (for now, will re-evaluate in a month or so). I'm on a heavy (70mg) dose of prednisone for three weeks, and then a taper for another five weeks).

Today, I'm just managing the side effects - mostly of the prednisone (hunger, weight gain, insomnia).

So you're all caught up. I feel pretty good right now - energy is still a little low, but I hope I'll get much more active in the days and weeks to come. 

We're up in Whistler for a week starting tomorrow, so that should provide lots of opportunity for short walks. To the bakery.