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!

Round Four

I've now started Cycle #4 of the Keytruda/Padcev combo therapy. According to the online buzz, this is about where we see whether things are working or not.

Yesterday, Laura and I met with Dr. Noonan (oncologist) who agreed, and is in the middle of scheduling a CT scan to see where we are (note a CT versus a PET - apparently the CT shows better definition for measuring sizes of stuff). (NOTE: CT scheduled for Sept 8).

In populations getting this combo (stage 3/4 urothileal cancer), they see about a 30% total response. Which in doctor-talk, means when they do a CT after several cycles (like me) they cannot find any trace of cancer. So that's hopeful. If they don't find anything, we scale back and go on some kind of a maintenance program - sort of like your hot water tank.

But of course, what about the other 70%? With some, there is no response at all, and the tumour(s) have continued to grow. With others it has either stayed the same size or shrunk. If either of those things happen, then we rethink.

I'm trying not to get ahead of myself and be either hopeful or pessimistic. It just is what it is, and we'll pivot just like we have every other time.

It feels as though we're trapped in this "holding pattern" - waiting for the next shoe to drop. But when I think about it, it's like having a job you don't really like. You do it because you have to do it. 

My favourite quote lately is from Mike Tyson: "Everybody has a plan until they get punched in the mouth". Seems topical.

Both Feet And A Boat

The nastiest side effect so far showed up about four days after the last treatment (#4 - end of the 2nd full cycle). At first it was just an interesting foot rash - both feet almost identical, with a red band of skin wrapping around the ankle. It was like this for a day or two, and then it got really painful. So painful that I couldn't walk or stand. When I called the oncology nurses, after a lot of questions and research, they determined that "you have to find a doctor to get eyes on this - ER, family doctor, acute care clinic, whatever - somebody needs to see this." Fortunately I was able to get in and see our family doctor's practice - he wasn't there but one of his colleagues would see me. She had a close look, eliminated all causes for real concern, and basically ended the visit with "you need to tell the oncology people to update the side effect list - I have no idea what this could be." Fortunately, the pain and rash subsided and today it only looks like my feet are a strange colour. And one of my toes fell off. It was a middle one so not important. 

At the same time, while sitting in a ferry lineup, I got a call from Dr. Narinesingh (radiation oncologist) about treating my tumour. He said at this point they would not approve radiation, but if there were any changes (tumour not shrinking, tumour growth, etc) they would absolutely revisit. Without current imaging, it was probably the only logical choice to make at this point. 

For a nice break from it all (and fortunately my feet were functioning again) we travelled to Campbell River and then to Quadra Island to meet up with Dave and Sherri on their boat. We spent three days with them anchored out in Quadra and Cortes Islands, and it was a very nice escape. We even met up with one of Laura's (and Sherri's) old high school friends and her husband - they were anchored about 100m from us at Manson Landing (Cortes). We did a little clamming the next morning, and everybody limited out in about 5 minutes. Dave spent a full day smoking and candying some salmon for us, all while trying to prevent the boat from catching on fire (what could go wrong?).

Finally, today we met with Dr. Suo (oncologist) - he wanted to put eyeballs on me before the start of Round #3. My lab work all checked out - liver function OK, kidney function OK, side effects under control (or gone). So tomorrow we'll start again at 100% dose of both Keytruda (pembrolizumab) and Padcev (enfortumab vedotin or EV). Bring it on cancer boy.

Radiation Oncology Consult

Laura and I met this morning with Dr. Dylan Narinesingh, a Radiation Oncologist at BC Cancer in Surrey. He spent a lot of time with us and discussed what he brings to the table.

Because of the current size and location of my tumour, he would recommend Stereotactic Radiation. This is very high dose radiation that uses several beams to precisely target the growth. It would be given over five consecutive days, and would happen during one of my "breaks" with the Keytruda/Padcev treatments.

The next step is to present my case to his associates on Tuesday next week, and discuss whether they should proceed or not. Some factors:

Regardless of what the decision is, we need current imaging. The PET was in May, so things have changed since then.

That imaging will determine how well the systemic therapy is working. If the tumour is shrinking, or is gone, why do anything.

The imaging will also determine just how close the growth is to the bowel. If it's too close, it's dangerous to do.

Net-net, he's calling me with the decision of the radiation people. 

Feels like the Star Chamber.

Where am I now?

I thought a little recap is in (reverse) order. 

I just finished cycle two (two treatments per cycle) of the Keytruda/Padcev (pebrolizimab/enfortumab vedotin) today. I'm enrolled in a drug trial sponsored by Merck and Pfizer. This trial is based on some very recent studies (late 2023) that show good results fighting the particular cancer that I have. I guess I'm adding to that data.

Cycle #1 finished on June 24th and went well, although I had to work through some awful itching, rash and heartburn - but it really only lasted about ten days. Type II fun.

On May 30th, I got the results of a PET scan I had earlier that month. Although I had been "clear" for the year preceding, it showed that the cancer was back. A smallish tumor (2cm x 2cm) in my pelvis turned out to "glow" during the PET (this is a sign of the cancer metabolising sugar). With these results, my oncologist enrolled me in the trial mentioned above. He said we'd continue with this therapy until I couldn't tolerate it any more, it wasn't working, or two years- whichever of these came first. In subsequent talks with him, he said it would be unlikely that I'd make it past four cycles without some adjustment in dosage or timing (tolerance).

There's a whole story of how this all came about, starting in May of 2023. The first time I wrote about it was November 2023, when I was in the middle of my first rounds of chemotherapy. Fun times.

The good that's come from all of this is focus. I've always been a kind of a single tasking guy, and now I pair that with a reckless disregard for other people's feelings when I say "no". Except for the grandkids.

It's also ignited a special kind of friendship with one of my buddies, Craig, who's lingering in the hospital waiting for a lung transplant. We can commiserate together (actually, it's quite the opposite - it's kind of invigorating). Makes you appreciate all the little stuff just that much more.

So we'll see how cycle two goes: I know with the chemo two years ago that's when the side effects really started to kick in. Hopefully this won't be quite as traumatic.

Party on Garth.

Round One Done

Round One of the Keytruda/Padcev therapy is now done. It's a little (a lot?) premature but I hope I'm not jinxing myself by saying "so far, no big deal". I'll update this post if things go pear shaped...

The clinic I get treatment at is a private one, across the street from Royal Columbia Hospital in New Westminster. There's only six therapy chairs inside, and it's a tiny space. But I'm well looked after and monitored - they can spend more time with me than the nurses at BC Cancer in Surrey. They are also more cautious about the infusions themselves - longer rinses after each drug (fifteen minutes of saline after administering either Keytruda or Padcev versus five minutes at BC Cancer). They also wait a half hour after the infusion/rinse is done before starting the next treatment or kicking me out - although today they gave me an option to leave immediately after the rinse if I signed a waiver.

My brother Don came over on the Hullo Ferry for the day and joined me in the (mostly very boring) session. They called early (10am) and said the drug(s) were delivered to them and I could come any time for the treatment, so Don and I got there at 10:30am. My appointment was for noon. We were back home by noon. I'm OK with this kind of service.

So one down, many more to go. Let's hope the side effects are minimal.

PS: This post is pretty clinical, mostly because it's my version of a diary on how things are going. I come back to this blog a lot to see what I was thinking months/years ago...

Update(s): 

6/25 - incredible itching - using antihistimine to control (works OK) 

6/27 - light rash all over (like sunburn) 

6/29 - this itching is driving me insane; got scripts from the oncologist for super industrial strength topical steroid cream (which sorta works). 

7/8 - Round 2 starts - itching gone

7/10 - Itching back again, skin peeling from rash. Kinda messy.

7/15 - Treatment #4 (Round #2) today - itching/rash/peeling mostly gone.

Therapy starts (again)

In case you're just landing here, and have no idea what this is all about, here's a link to a post I did a while ago that brings you up to speed.

I have my first (of many, many) Keytruda/Padcev treatments on Tuesday, June 17. This will be done at a private clinic, since the therapy is part of a drug trial sponsored by Merck and Pfizer.

As far as I'm aware, this combination is standard therapy for metastasised bladder cancer in the USA. One of the drugs (Padcev or Enfortumab Vedotin or EV) is approved and standard of care in BC, but the combination of the two is not yet approved or paid for by BC Medical.

Very recent clinical trials show that the combination of the drugs give better overall results/responses than either of them on their own.

So I'll see how things go. Mike and Brenda have a friend who's on the same regimen (we're pretty sure), and had some nasty side effects at first, but has managed to get them all under control and is doing quite well. As long as water doesn't taste like metal, I'm sure I'll be OK too.

Onward and upward. 

UPDATE: June 17: Had my first session (both drugs) today. Took about 2.5 hours (Padcev for 30 min, 15 minute saline rinse, 30 minute break, Keytruda for 30 minutes, 15 minute saline rinse, 30 minute monitor to see if there's any reaction). So far, nothing.....

Nice

Since I wrote the It's Back and the Doug 5.0 posts, I've been overwhelmed by your kind responses. I think Laura and I have been busier seeing people in this last week than we have been in years.  So thanks for reaching out. It means a lot.

This week, both Merck and Pfizer reached out to me to arrange the combination therapy (in Canada we call it EVP, in the US it's called Keytruda/Pacdev). Now I'm just waiting for a start date - it will likely be in a private clinic, as this will be part of a drug trial.

Dr. Wong (Urologist/Surgeon) called me today to offer an opinion on surgically removing the tumour seen in the PET scan. He said he could, but doubtful if he should:

• The tumour(s) would just pop up somewhere else,
• It would involve another surgery, and all the risks that come with that,
• And it would delay any other therapy (like EVP).

He did suggest we pursue radiation - and Dr. Suo is following up on that one. He also said he would present my case at the "Tumour Board" - a meeting all the oncologists have once a month (next one is June 26).

I also have to follow up with Dr. Suo about getting a chemo port installed - it would save my arm/hand veins as I go through the next stages of chemo/immunotherapy.

Doug 5.0 **

OEM Doug

A couple of old friends have made some poignant comments over my last post, and it's time to turn the page on Doug 4.3. I think this event is major enough to warrant it (thanks, Sherri). Also, I don't care what you think. It's my blog.

This post is really premature, but I figured I should get it all in writing before life throws another curve-ball. Or knuckle-ball. Or fast-ball. TLDR: Not dead yet.

Steve called me the other day, and after a long chat asked what I was optimistic about - and I didn't have a ready answer for him. But after a couple of minutes I thought that I am not exactly optimistic, but I am mostly grateful.

• I'm grateful for our family. Everyone is doing well. Everyone is healthy. Everyone is smart. Everyone is kind. Most of the time, my family understands my humour.
• I'm grateful for being surrounded by friends. Many, many we've had for thirty, forty or fifty years. And these aren't just people we know - these are people we still see regularly. Most of the time, these people do not understand my humour. Or me. They tolerate me because of Laura.
• I'm grateful that I got an extra nineteen years. My heart bypass was in 2006, and my stroke was in 2009. Both could have been extinction events. It's been all me-me-me for almost twenty years.
• I'm grateful that Laura and I took the time to tackle our bucket list early. We've travelled a lot, seen a lot, and done a lot. I've had a good ride. So long and thanks for all the fish.
• But mostly I'm grateful that Laura, the love of my life, will be OK. She's surrounded by a world of people that will help and support her. All of you know it was always her, and I was just along for the ride.

* Special shout out to my brother, Don, who's been there through this whole roller coaster.

**

Doug 1.0 - OEM Doug in 1960

Doug 2.0 - Heart Bypass Surgery in 2006

Doug 3.0 - Stroke in 2009

Doug 4.0 - Cancer in 2023

Doug 4.1 - Chemo

Doug 4.2 - Radical Cysectomy

Doug 4.3 - Immunotherapy

Doug 5.0 - Today