Just a few brief updates.

I had the second IVIG treatment last Friday which was uneventful… always a good thing.

Blood work is now down to once a week and my Neutrophils are greater than 1 without being supported by Grastofil/filgrastim injections. This is good too because it means I can stop the injections and a couple of the medications, particularly the really expensive one!

My second pentamidine treatment is scheduled for May 31 at HSC.

A second MRI of my heart is scheduled for June 9th to be compared to the February 1, 2021 imaging in an effort to diagnose the chest pain.

June 18th will be a busy day with the PET scan followed by IVIG treatment #3.

June 21st we will meet with the oncologist for the results of the PET scan. A big day for sure.


It’s been a while.

There has been a lot going on.

Strange times when you’re busy, but not busy, can’t do stuff, don’t want to do stuff, make some plans only to have to change them and motivation is low. Sometimes the days seem endless for many reasons and sleep seems like a really good thing if you can get it. It’s been like that pretty much non-stop since we’ve returned from Toronto.

C&C, not the sailboat (I wish!) but Cancer and COVID and then throw in some other issues and you have the trifecta of a perfect storm. Such is life these days.

Anyway, here is the update. Back on May 1st I started to experience some chest pain. And by pain I mean a very mild ache. However, this is the same feeling that I had in December of 2019 which lead to the discovery of the recurrence of the cancer. Needless to say this was quite distressing. It was hard not to wonder if the CAR-T treatment wasn’t working, or if the tumours were getting bigger and causing problems. After several days wrestling with this I finally told Shirley and then the oncologist.

When you say “chest pain” to a doctor, they immediately go to “is it a cardiac event?” (aka a heart attack), This chest pain has none of the classic heart attack attributes but, doctors want to rule this out and rightfully so. I’m given two options, go to the ER or go to Urgent CancerCare at HSC. Back in December of 2019 for this same issue the ER visit was 5 hours of waiting and a 15 minute consult that says no cardiac event. So, I opted for Urgent CancerCare. I’d been there one time before on a different issue and received quick and excellent care.

Urgent CancerCare is a dedicated unit that sees only cancer patients. It’s like 2 bed ER and if something really bad is happening they punt you over to the main HSC. I arrive on a Thursday afternoon and I’m the only patient. I have a doctor, a nurse practitioner, and two other nurses all looking after me.

In short order there is a blood test primarily for cardiac enzymes (troponin T (TnT)) to indicate if there had been a recent cardiac event ,an EKG and a chest X-ray. Basically no cardiac event and no explanation for my chest “discomfort”. A CT scan is scheduled to investigate further. The CT happened on Wednesday May 12, 2021.

Today, we’ve had the call from the oncologist about yesterday’s CT scan. The tumours have decreased in size and at this point it’s being referred to as a “partial response” to the CAR-T therapy. Typically, they would not even investigate until 3 months (June 17th). The CT doesn’t indicate if the tumours are just leftover scar tissue from the treatments or active disease, only the PET scan will determine if anything is “active”. None of this explains my chest pain/ache. Just to be clear, I’m not suffering ?, I rode my bike 57km this morning. The concern was that it feels just like Dec 2019, which lead to the discovery of the recurrence of the cancer. I have a referral to a cardiologist and likely another MRI of the heart. This will be to further investigate if there are any heart-related concerns.

A PET scan has been requested and is likely in early to mid June. The PET scan is the definitive test to determine if there is active cancer present. Basically, you don’t want to light up like a Christmas tree on the images. 😉

A nice day for a ride