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

It's Back...

Alan and I went to see my new oncologist, Dr. Suo (Dr. Noonan is on sabatical) this afternoon for the results of my PET scan in early May.

The results are not good. The worrisome mass seen in the CT scan last month is the glowing red/yellow spot in the middle of the PET screenshot above (the red/yellow at the top of the shot is my urostomy bag). The scale on the left of the screen (white to red) is the aggressiveness of the tumor. Mine's very aggressive.

Bladder cancer, for me, is going to be terminal. All we can do now is treat and try to slow it down. There are no curative options. From here on in, we'll be playing "wack-a-mole".

Dr. Suo left us with some options, and they are:

1. Talk with Dr. Wong (my urologist/surgeon) about resection (surgical removal) of this tumor. It's in an awkward spot, and it's not likely, but it's worth asking.
2. Dr. Suo is going to talk to the radiotherapy people about radiation. Again, close to the bowel, and they don't like to do that, but worth asking.
3. Lastly, and most importantly, I'll be starting a new program of chemo-immunotherapy. The drugs PADCEV (Enfortumab vedotin) and KEYTRUDA (Pembrolizumab) will be given every couple of weeks until it either stops working or I tap out.

 

 So there it is. I have to decide, at some point, when the treatment vs. quality of life equation becomes an issue. For right now, I'll start the chemo/immunotherapy and see how I tolerate it.

 

PS: The FGFR mutation I talked about last month is a non-starter - I don't have it.

It isn't over till it's over

We met with Dr. Noonan (my oncologist) this morning to get imaging results.

I had a CT scan on April 3 to see if there was any indication of cancer spread (my last CT was in June 2024 and was clear).

It showed a small (1.5cm) growth on my left pelvis. It could be scar tissue from my surgery in Feb'24 or it could be cancer spread.

To determine what it is, I'm now being scheduled for a PET scan (PET uses sugar to detect cancer). 

If the PET comes back negative - then I guess we'll figure out what it is and what to do about it. But if the PET comes back positive, there are some options.

The pathology from my surgery is being sent to the lab to see if it will respond to a FGFR immunotherapy. If it won't, then we'll consult with radiation oncologists to see if the growth can be treated with high-dose radiation (it's close to the bowel, and they don't want to radiate the bowel). If neither of those are options, then there's some other immuno/chemotherapy to try. And then there's some research studies - and being relatively young and healthy I should be eligible.

Net-net, all is not lost. There are options. I feel good and am in pretty good shape. 

Bring it on.

Update: 4/17/25 - spoke with Dr. Eigl about the trial (link above) and he's starting the ball rolling with testing of my bladder sample (plus additional blood testing) to see if I have the FGFR3 mutation. If I don't, there are some other newer therapies to try.

Never too late ???

Over the last couple of years my brother Don has been a huge help for Laura and me (and Kath and Dave) while I've been going through this latest adventure in cancer-land.

He was there at the hospital when I had the surgery, drove my dad in to see me, brought coffee in the morning while I was unable to move, and helped Laura make sure that somebody was always either there or nearby all the time. And he didn't seem to mind sleeping on the couch.

He was with me at my last chemo session in December 2023, and at my final (?) immunotherapy session last week.

This was not the first rodeo.

In 2006, Don also showed up to help us when I had bypass surgery and we had a move scheduled for the exact same time. He was living in Fernie at the time, so no small trip to come see us.

I can't count the big (and small) kindnesses over the last fifteen years.

So thanks again Don. I doubt I could be as good a brother to you as you have been to me.

 

Twelve down, none to go?

 

I was always convinced that I would have Nivolumab treatments for a year. Every four weeks for thirteen rounds.

Yesterday was treatment number twelve.

Normally when I go it I drop off an "appointment card" where they fill in what's next (next labwork, next therapy, next meeting with the doctor). This time they returned the card with only two items: (1) CT scan scheduled for April 3 and (2) meeting with Dr. Noonan on April 14.

This was unusual, so I called back to see if they missed something. They didn't. The only thing on their books are these two things. So maybe that was my last session? I guess I'll find out on April 14th, where I'll also get the results of the CT scan on April 3.

The scan will tell us whether they can see any cancer spread. I feel good, and have no obvious symptoms of spread, so fingers crossed.

Am I Naively Optimistic?

I'm pretty active on a subreddit called r/BladderCancer (d'uh). I find there's lots of people there that have been coping with this disease for a long time - the majority have NMIBC (non-muscle-invasive bladder cancer) where the prognosis is generally good, and the disease is managed in the short and long term. Less often, I find another case of MIBC (muscle-invasive) bladder cancer. This week, a son wrote about his 54 year old dad with MIBC who had a radical cysectomy, and found one involved lymph node in the pathology. 

Sounds just like me.

His dad's surgery was in January, and the pathology was just recently given to the family and he was wondering what the probable next steps were. He gave some details on the pathology, so I went back and looked at the details of mine, specifically about the involved lymph node:

When I reread my pathology, with many months of research and introspection, as well as my general feeling right now (quite good - pretty normal), I dove deeper into the details of the affected lymph node.

Specifically the terms "subcapsular" and "Extranodal Extension". Subcapsular means inside or below a capsule, and Extranodal Extension means the cancer has escaped the capsule(s).

So I guess this means that, although the cancer escaped the bladder itself, it was still incapsulated in one lymph node. The node itself was pretty large (2cm - average lymph nodes are about 12mm), and the "largest metastatic deposit" was 2mm.

Because I've had no symptoms of any kind in the last 10 months (except that UTI in the summer) that maybe indeed the entire mess was removed in the surgery a year ago.

Everyone teases me about being a fatalist (even before the bladder cancer), but I'm finding more reasons now to be an optimist.

Seventy Seven

I had session number ten (of thirteen) yesterday. Again, completely uneventful and the nurse even got the IV catheter in on the first try (this has been somewhat hit and miss over the last forty weeks).

The only other stuff going on is that Laura is back in Harrison Hot Springs for her annual five week job at the Canadian Labour Congress. She has been providing child care for their "Winter School" since 2012. It's her favorite gig and she looks forward to it all year.

As for me, I've been occupied selling off three of my watches - I now have three left. One was a SARB035 that we gave to Dave years and years ago - but he doesn't wear a watch, so was OK with me selling it for him (better somebody get use out of it than sitting in a drawer somewhere). The other two were recent purchases that I never really bonded with - so out they go.

The ones on this page are the ones I'm keeping. You probably don't care what they are. But in the off chance you do, just hover over the image.

So I'm in the home stretch now - the last immunotherapy session with be on April 15. Dr. Noonan wants to have a phone call in February (she doesn't even want to "see" me) and we'll determine where we're at.

Oh - Seventy Seven is the percent I've done now.

Christmas - Festivus 2024 Stewart Newsletter

Welcome to my annual announcement of how we’re doing so much better than you. Even if we aren’t.

Dave. After living in Montreal for several years, and trying really hard to make his art pay, he has decided to take a break from all the Frenchness and move back to Seoul. He’s teaching English, and he begs forgiveness for being the catalyst behind their recent Martial Law debacle. Note that he left behind a bunch of paintings at the Corkin Gallery in Toronto. Have a look and buy something, would you?

Kath and Alan and George and Edith. No huge change this year except that George is now at kindergarten all day. He’s also in Tai-Kwon-Do on Saturdays. The Jake Paul fight is scheduled for later next year. Edith is a mini Kathryn - knows exactly what she wants and when she wants it. Still at the daycare beside Children’s Hospital - where Alan works. Kath is a teacher in North Vancouver and I’m exhausted just hearing about their busy days. They all had a big trip back to England this past summer where there’s a ton of family on Alan’s side. We see them often, and the grandkids stay over on the weekend pretty frequently. I have Lego in my sock drawer.

Laura keeps busy with the part time ECE gig. She’s slowing down a bit and trying to plan some handing off of her bigger projects (CLC in Harrison Hot Springs every year).  We’re still living the hi-rise life and, come this summer, it will be the longest we’ve ever lived in one spot.

Me, I’m still alive. After the bladder cancer diagnosis last year, I had my bladder (and other bits and pieces) removed in February. The cancer had spread, and so now I am on a years’ worth of immunotherapy (last treatment will be April ‘2025). So far, so good. I don’t have any symptoms and my last CT was clear. I look fantastic, and my charm is off the charts. I’ve kept up my blog (it’s my therapy, and you're reading it now) and now goes back some 18 years.

So in a nutshell, that’s it. We keep on keeping on. The grand kids get bigger, and our kids get older. Life is pretty good.

We hope your lives are good too, and you’ve learned to pivot when uncomfortable stuff gets in the way (that’s my new word - pivot).

Wishing you all the best for 2025.

Platonically,

Doug (and Laura).

A New Hope

Nivolumab treatment number eight is tomorrow, and today I had another (bi-monthly?) sit down with Dr. Noonan (oncologist). I'm pretty convinced the doctors only want to see me in person now to actually get their eyeballs on me. If I look OK, I'm likely OK. If I look sick, then there's alarm bells.

Anyway, I look good, and she was pleased about that. So other than talking in general about treatment side effects, I had a couple of ad hoc questions.

• Q: If things continue to go well, what is the typical natural progression of this disease? Does it hide in the background for years?
• A: Urothelial cancer, if it's not cured by the surgery or the nivolumab, would tend to come back in the first two years after treatment. After five years, the odds fade into background noise (my interpretation on the five year stats).
• Note: I don't know when the two/five year clock starts/started. Should have asked that - next time.
• EDIT: I asked for opinions on the Bladder Cancer Sub-Reddit (I've received lots of good information there), and the consensus is that the clock starts when there is no evidence of disease - NED (so for me, after the radical cysectomy - RC). So my clock would have started in March'24.
• Q: So if it comes back, is there anything that can be done? I've been going on the premise that Nivolumab was pretty much the last hope.
• A: There is another immunotherapy, enfortumab vedotin (EV), that is showing some promise - and that would likely be the next step (should things go sideways with the current treatment).
• Q: What can you see with the monthly bloodwork I have before each immunotherapy session - does it tell you anything other than I'm OK for the next treatment?
• A: Dr. Noonan can see markers in those tests that will say things are not right. This would lead to some more diagnostics, beyond just modifying the session.
• Q: So we talked about not doing another CT scan until the end of Nivolumab? What is the schedule?
• A: We'll do a CT at the end of the current treatment (April '25) and then every six months for two years. And then every year for another three years - so a total of five years. That seems to be a typical screening for every cancer!?

So things look good right now. I feel fine, energy levels are good, and side-effects are minimal and easily handled. My next treatment is tomorrow (Nov 26) and the one after that is Christmas Eve.