First Contact

Today, we had our first direct conversation with the University Health Network (UHN) CAR-T coordinator Andrew and learned a lot of stuff about our upcoming visit to Toronto on February 5th.

The day will be pretty jam packed with activities. Prior to our 1:30pm appointment I’ll get some blood work and an EKG while learning how to navigate around the 1st floor of the Princess Margaret Hospital.

Then its up to the 2nd floor to find Hematology North and check in. Shirley & I will meet with a number of people and talk about quite a lot of stuff. We will be introduced to the staff physician who will be responsible for my treatment, a fellow/resident who will assist the primary physician and take my history, vitals, and examine me (?!). We will also meet the CAR-T coordinator Andrew in person for more detailed explanations and consent paperwork. Finally, a social worker, whose purpose will become clear later.

There are two different products for CAR-T therapy and during this initial visit the physician will decide which one is best for my case. My blood will either go to New Jersey or California depending on which product is selected. I’ll also get registered with the selected vendor for their travel assistance program to help with travel costs and accommodations.

Collection of my blood will happen ASAP after the vendor/product has been selected and the date of collection will likely be known on Monday February 8th. It is highly likely to be done on or before Feb 12th. The lymphocyte collection process sounds like an all day affair hooked up to a machine with blood out one arm and back in the other arm. This is quite similar to the collection process involved in the Stem Cell Transplant process that I had back in May 2020 except this time they are collecting T-cells.

During the visit they will determine if any interim treatments are necessary. Interim treatments might be steroids, chemotherapy (in Winnipeg), radiation (in Toronto or Winnipeg). Also, based on the initial visit they will decide if any additional scans are required.

An MRI scan (in Winnipeg) of my brain will be required as a baseline before the the infusion (getting my modified T-cells back) as will a PET scan (in Toronto). When they are satisfied with all the test results I’m good to go for the infusion.

However, prior to infusion, I’ll get some chemotherapy as an outpatient in Toronto. This is to “clear out” my current lymphocytes (aka kill them off) and make “room” for the CAR-T lymphocyte cells. Sadly, contrary to prior info, there will be hair loss involved yet again. Oh well.

Once the chemo is completed I’ll be admitted for a minimum of 7 days for the infusion and monitoring post-infusion. Once I’m discharged from hospital there is another minimum of 30 days where I need to stay within 40 minutes of the hospital.

During this 30 days there will be some pretty intense monitoring and follow-up. Twice a week I’ll need to return to the hospital for blood work and checkups with a nurse/nurse practitioner. On all the other days of the week, I’ll get a phone call where I’ll report my blood pressure, oxygen levels, temperature and advise them on my condition and any symptoms. At the end of 30 days or when they decide I’m good to go home there will be a final in hospital review.

Shirley has been cleared for all the consultation appointments as my “support person”. She has responsibilities to keep me in line and they need to explain her duties in person. When I am admitted she can visit twice a week. She can also drop off/pick up stuff anytime and it will be shuttled to and from my room. However, she can’t attend any tests, blood work or the collection process.

Phew, that seems like a lot eh? I don’t think there will be anything new before we have the first Toronto appointment so likely nothing on the blog until Saturday February 6th.

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