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).

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