And The Results

If you back a couple of posts, you'll read about our adventures with a film crew. 

Here are the results:

There's Always A Story

There is always a story to go with every visit to BC Cancer.

About three weeks ago, brother Don and nephew Andrew came back from hiking in Tombstone Territorial Park in Yukon. Don had asked if they could stay over on their way back home, because their flight arrived too late to catch a ferry.

I had forgotten about this altogether, and when Laura and I got home late Saturday night, there were strange shoes at our front door and somebody sleeping on the couch.

No worries, I got up the next morning and made coffee, and Don crawled out from under the couch cushions. Andy got up a bit later, but Don was complaining of a cold coming on. 

Two days later, Laura and I both got sick. So thank you Don.

While feeling somewhat human, I had a scheduled CT scan for BC Cancer.  They scan "throat to thighs" on me.

About a week after this, still not feeling 100%, I called my GP and asked if he could have a look at the CT scan report to see if it saw anything on my lungs (thinking this might have developed into pneumonia). There will still small (but resolving) nodes on both lungs, so no worries.

But him reading that CT report triggered the system into making it available to me.

So late last week, I went in and read the CT report.

It showed that my "lesion" had grown from 1.8 x 1.3 cm to 3.6 x 2.4 cm (doubled in size).

The radiologist in the report said "disease progression". 

This would not be good news.

However, being the ultimate pragmatist, I wanted to wait and see what Dr. Noonan and Dr. Narinesingh had to say about this, knowing that I was in a trial and the level of radiation I got was not normal. I didn't tell anyone.

Both doctors were pleased with the resulting scan, and explained away the size change by the amount of radiation I had (single dose, 20Gy) and the cellular damage it had done to that entire area.

They were confident that we were seeing the after effects of massive radiation in an especially blood rich part of my body, and my body's immune system trying to repair all the damage that had been done.

I'll have another CT in December, and see where to from then.

Well This Was Unexpected

I got a random call a few weeks ago from Dr. Narinesingh (Radiation Oncologist). So random that I didn't recognize the number and had to screen the call.

The doc asked if I'd like to be involved in a BC Cancer fundraiser, and since I've done a couple of those with the Heart and Stroke people (dinner, speeches, etc) I said sure. He said he'd forward my name along and somebody would be contacting me.

What this turned into was not on my bingo card.

Yesterday, Laura and I spent from about 4pm - 8pm down at BC Cancer doing a film shoot. Not a film shoot with a man holding an iPhone. There were so many people involved they didn't fit into the ETHOS room (in the photo, the photographer had to clear everyone out of the room so she had a blank slate - that's me with my head in the machine).

After I spent about an hour on the table with the ETHOS machine (took about twenty "takes" with this huge video camera inches from my head), we went to Queen Elizabeth Park where they shot some footage of me on my bike. And me taking a drink from a water bottle. And me looking at my watch. And Laura and I walking down a path. 

All of this will turn into ???

Pretty cool.

Nothing to Report

Laura and I went to BC Cancer for the (insert number here) time today to meet with Dr. Narinesingh (Radiation Oncologist) and a Clinical Physicist (I forget her name).

Dr. Narinesingh explained the way it works is that he identifies the target (tumour) and any tissue around the site that is more reactive to radiation (bladder, kidney, bowel). Then the job of the physicists and mathematicians is to deliver the 20Gy prescribed dose to the target tumour using multiple beams of radiation, launch at different places and different angles around my body, avoiding all the tender spots.

With me, I assume some chunk of it was through the bone - my left leg was quite sore for a few days afterwards. Right now though, it's as though it never happened. Nothing lingering at all.

My next CT is Sept 16th, and then every three months for a year (then every six months for a couple of years, then every year until the study ends at the five year mark.

Light Me Up

I had my single (only) dose of radiation today. As with painting, prep is everything:

• Two weeks ago, I went to BC Cancer and had a CT taken of my pelvis: My thighs were clamped so my pelvis couldn't move, I was tattooed in three spots, and then they took some pictures (or is it a movie?) with the CT Scanner.

• Today, I went back to BC Cancer for the radiation part of the deal.
• They laid me on the table, clamped me down, and ran another CT scan to see if anything had changed or moved.
• I then waited for about 15 minutes while they studied the CT, and my radiation oncologist confirmed things were OK.
• Then the radiation dose and target was finalized and the same machine (CT/Radiation in one machine) circled around me.
• The radiation portion took about 2 minutes.

Because I got such a large radiation dose at one time, I will likely see some side effects: "sunburn" on my pelvis, tiredness, bowel changes. 

Trivial. 

But why is my leg glowing?

 

Another Curveball

On May 1, I went and got my COVID vaccine shot. It was a nice day here, and I was wearing one of those sun shirts (hoodie, long sleeves). That was a mistake.

I couldn't roll up my sleeve far enough for the injection (left arm), so I just pulled down the neck and she did the injection there.

After a day or so, I noticed that my left arm was quite sore. Unusual for me, as every other vaccine (flu, Covid, shingles, pneumonia) there were no affects at all in the arm.

The arm continued to ache and ache. Then we drove to Prince Rupert/Haida Gwaii and back. It was a tough drive both ways because I couldn't find a position where my arm would stop hurting. I tried everything I could to control the pain but nothing worked - not Tylenol, not Advil, not heat, not cold - nothing.

When we got home (May 22) I made a doctor appointment to have things checked out.

What we think happened is that the Covid shot was too high on the arm, and damaged a nerve. Dr. LeVoi has put me on nerve pain medication (gabapentin - an Epilepsy drug) and I think it's starting to work.

Sigh.

LASER

Last week, we met with the radiation study team at BC Cancer. I've been accepted into the SIMPLIFY study and am being randomized into one of two arms: 

• Arm "A" is a single dose of stereotactic radiation given one time 
• Arm "B" is five doses of stereotactic radiation given over five consecutive days

The amount of radiation in Arm A is the biological equivalent of the same dose received over five days with Arm B (it's not simply five times as much, but has to do with a lot of biology and a lot of math).

The study is to see, long term, what the side effect profile is with both arms.

I got news this morning that I have been randomized, and am being enrolled into Arm A (single dose) of the study. I expect to hear from them soon to go get a calibration CT scan so they can proceed with the single zap.

Note that during the zap, they will concurrently use a CT to adjust and verify in case anything has moved.

Sharks with Laser Beams

The results of the PET scan came in, and Laura and I went in to see Dr. Noonan for all the details. The tumour/lesion has reduced in size slightly from 21mm to 16mm (24%). The intensity (SUVmax) has increased from 13.9 to 17.2 (29% increase).

The SUVmax value increase could partially be explained by the PET being taken on two different scanners (I could see this in a macro view where the background in the image is brighter in the new image).

But in the final analysis, the tumour is a little bit smaller, but a little more intense.

Dr. Noonan referred me to Radiology for a consult to see what they thought.

Yesterday (1 week after the results meeting) I met with Radiology. We spent over an hour going over the scan itself and I was offered a spot in a clinical trial: SIMPLIFY-SABR-COMET.

Standard of care today for my type of lesion is Stereotactic Ablative Radiotherapy (SABR) where they use multiple beams of radiation focused on the tumour, normally given 5 doses over 5 days.

The study is to determine whether giving a single dose of the radiation (equivalent to the cumulative total of the traditional 5 doses) has a different side effect profile from the standard protocol.

The advantage to the medical system would be to increase treatment throughput by 500%. 

The advantage to the patient would be to reduce the time you spend getting the treatment by 80%.

But nobody at this point knows if the side effects between the two methods are similar. 

The assumption is that the treatment outcome would be the same because you are getting the same amount of radiation - just one is all at once, and one is over 5 days.

Because it's a clinical trial, there would be a lot of reporting, bloodwork and imaging (PET/CT/MRI).

So I'm leaning toward saying yes - although I have a few more days to think about it.

3 Months or 5,000km

The PET scan happened last week, and Laura and I got the results today. 

The tumour is not growing, but has increased slightly in intensity. I don't have the actual lab report, so I cannot compare the tumour velocity (tumour size x measure of metabolic activity) with last time.

Dr. Noonan is going to send in a request to see if the radiation oncologists will light me up (5 sessions, 1 per day for 5 days) to zap the tumour.

Regardless, the next check in is 3 months. So I have a whole summer to enjoy.

Rupert Nite is this Saturday, and we head to Haida Gwaii on May 9.

An Even Shorter Update

For shits and giggles I loaded up my history into Google Gemini to see what it would say. Because the tumor growth had pretty much stalled, I was hoping it would come back and add a little optimism into the mix and say "hmmm ... this is not behaving like an aggressive cancer".

Alas it did not. It came back and said "this is cancer until proven otherwise". It also said an important measure in my upcoming PET scan would be velocity of the tumor. 

The scan here was taken about a year ago, and the values the radiologist would look at to determine velocity would be the actual tumor size (then versus now) and the SUVmax (the brightest pixel on the scan - not shown here but the scale goes from 0 to 17.5). So I guess you cannot be just a guy writing a blog and interpret this scan - you have to know what you're doing.

So that's my question - what's the velocity? 

My PET scan is scheduled for April 22, and I see Dr. Noonan on April 30.

A Short Update

As per my last update, the growth/tumour in my pelvis hasn't changed size for nine months. For a cancer to be as aggressive as mine, and see no change, is strange.

When I saw Dr. Noonan last week, her plan is to do a PET scan in three months to see what's what. If it glows like the previous scan (May'25) then there is something metabolic happening. The best explanation is cancer, but it could be something else. If this is the case, she'll push for radiation. The radiation people told me that didn't want to do anything until/unless they see change - but she'll argue that we should handle this growth while it's still small (about 15mm x 15mm) versus wait till it grows or spreads.

If it's not glowing, and it's not spread (ie: glowing somewhere else in my body) then I think I'm in the clear for now.

So there you have it. 

In the intervening months, we're going to plan a trip to Haida Gwaii. 

The Phonecall

I had my latest CT scan on January 12, where we'd see what is happening to the cancer in my pelvis. It had been "stable" since April 2025, and what it does now would guide next steps.

I have an appointment with Dr. Noonan(oncologist) on January 28 to discuss the CT but, as luck would have it, I had occasion to call Dr. Wong (urologist) in mid-December. He saw that I had a CT lined up and said that he'd call a week later to discuss.

Dr. Wong is much more "just the facts, ma'am" than is Dr. Noonan, so I'd rather get the news (good or bad) from him. 

So here's the news: 

• I've had a nasty cough for about 8 weeks now (nothing else, just a cough). When my GP listened to my lungs a couple of weeks ago, he said they were OK - and that if I had pneumonia I would not look as good as I did.
• Turns out, the CT showed infection in my lungs. I'm gonna get that sorted out this week (I have an appt with my GP on Thursday, and am trying to get in earlier).
• The tumour has not changed size, or metastisized anywhere else they can detect.
• The cancer was aggressive, so we assume something would have happened over the last 8 months. Nope. 
• I have a meeting with Dr. Noonan next week and will ask her to explain. This will likely mean another 3-6 months of monitoring so see what, if anything, happens.

So that's the news today. Good news overall. I can get drugs to combat this lung infection, and the tumour isn't doing anything.

Other than pretty low energy, and this incessant cough, I'm feeling pretty good.

Festivus 2025 - "You Look Marvelous" Edition

So 2025 is in the books. I denied this for years, but can now confirm that time moves quicker the older you get:

Here is a quick update on the family, again to show you how fantastic we look and how fabulous our lives are.

First, and most importantly, the grand-kids. George is six and in grade one. Edith is two (almost three) and in daycare at Children's Hospital (where Alan works). Edith spends lots of overnights with us over the year, but George not so much now - he's too busy with friends, Taekwondo, his job, his car. Edith is a different person altogether - very laid back, very fashion forward, loves gossip. We're pretty lucky to have two Mensa grandchildren.

Kath and Alan are in the thick of adulting and parenting. They spend most of their free time in the car, taking kids somewhere, getting groceries, having the odd night out, practising witchcraft, paying bills. The same stuff we all did when we were forty. Only now it's turned up to eleven. I get tired just watching.

David moved back home from Korea in September (mostly because of me and my excellent health). He's staying with us till he can arrange

his own place and studio space. Against the odds, he won another painting grant (his third from this same Foundation) which will help him rent the studio and buy some supplies. He's spent the last few weeks catching up with his old friends - all of whom ask "so, how long are you here this time?". We think he's home for the duration (we don't have an extradition treaty with South Korea or China do we?).

Laura is busy as ever, and her health continues to be the polar opposite of mine - it's the junk yard dog DNA. She volunteers a lot at our Crossroads Hospice Thrift Store, where she brings home more stuff every week because it was such a deal. She's also in a quilting guild, and I enjoy the happy dialog (PG13) she shares every time she's at the sewing machine. When she's not volunteering, she's ECEing and teaching children how to scam seniors on the phone.

Me, I'm still here. If you want the nitty gritty on all the details, it's better explained in a short recap here. Bottom line, it's been two and a half years living with my cancer, and am now in a holding pattern, waiting to see what my next CT (January) shows. I've slowed down a lot the last few months, but am still reasonably busy with the building (condo tower). I gave up all the El Presidente stuff I've had for a decade, but am now flexing my "soft power". How do you transfer hidden condo fees into an untraceable personal bank account? 

I know there's a ton more stuff I could talk about here, but I know I dread writing long holiday updates as much as you dread reading them. Reach out!

Here's hoping that 2026 is good to you and yours! Happy Festivus!

Platonic Love,

Doug (and Laura)

What they don't tell you about steroids

Nobody told me about this.

I had heard that prednisone was a nasty drug, but didn't think much about it. Even after being on it for three weeks (at 70mg) and then starting "the taper". 50mg for a week, then 30mg, then 20mg, then 10mg, then 5mg. No big deal. Except that the trigger we have to tell us to stop eating seems to get broken - I was hungry all the time (I bought a Costco pumpkin pie and ate it myself over two days). Can't say this was really a downside, as I lost a lot of weight when I couldn't taste anything. 

So everything is just ducky. Until the taper down to 20mg. Then something happened. My face turned bright red, and I got really tired (like, chemo-tired). It was hard to get out of bed in the morning and make it to the couch. When I called the nursing line to ask about this, they said "yup, know about that, it's a side effect of the taper". I went onto Google Gemini and frightened myself.

Today, after being on 5mg for a couple of days, I think things are getting back to normal. Energy is slowly returning, the red face is mostly gone, appetite is back to normal. Still tired, but better than it was.

Now maybe I get a couple of months of feeling "normal". It's been a while...

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.

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!