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.