Well, things are moving right along and I’m definitely getting the feeling that this is really happening.
Last Friday we received a letter from the Manitoba Government indicating they would fund the CAR-T therapy in Ontario as the three Manitoba based approvals had been confirmed.
Today we received notification that I’ve been approved by the University Health Network (UHN) for an in-person consultation in Toronto. They should be contacting me in the next 2-3 days to set up the appointments.
From what we know today the schedule is likely to be as follows:
The initial trip to UNH for the consult over 4-5 days. This is a final confirmation that I’m a good candidate for the CAR-T therapy. If the consult is positive, my T-cells will be collected for processing by the lab at that time.
Lab processing is estimated to take 3-4 weeks. During this time we will return home and yes we’ll need to do the 14 day quarantine thing. 🙁
Once the cells have been processed we will travel back to Toronto for 4-5 weeks where I’ll be admitted for the therapy (5-6 days) and then monitored for recovery (the rest of the time).
So, all up it’s looking like 10 weeks. I should be good to go for lake season.
Of course there are some COVID considerations to deal with regarding all the inter-provincial travel and we will have a Manitoba Patient Representative that will be working with us to sort through all the details.
Thanks for all the love, support, encouragement, and prayers for the both of us in this new part of the journey.
Today’s update from the oncologist is pointing in a new direction. Instead of going south to the Mayo Clinic it’s more likely that we will be going east and staying in Canada!
The Lymphoma team met this morning and reviewed my case and of the three options they feel that the CAR-T therapy has the best possibility of a cure / long term remission.
More chemotherapy was not viewed as a good option due to my previous exposure to high dose chemo during the stem cell transplant process. Immune therapy is still an option but is used is to control the lymphoma and is not a cure / long-term remission. Plus it is a treatment needed for the rest of your life.
CAR-T has been available in Ontario for a little while now, but just recently, as in the last few days, has become the choice for Canadian patients. Locations are Toronto (Princess Margaret) , Hamilton and Ottawa with Toronto seeming the most likely. The Mayo Clinic is still an option but only if Canadian capacity is not available.
However, there are still several approvals and likely a ton of paperwork (not me 🙂 ). The meeting of the Lymphoma Team this morning was the first hurdle. Next is approval by the Provincial CancerCare Committee followed by approval from the Provincial Government for the funding. After that it’s applying to Ontario for approval and finding a site with capacity for the therapy.
The timeframe is still up in the air with so many entities involved, but apparently things can move “fairly quickly” in the experience of my oncologist. She said they would follow-up in one week to let us know the status.
In prep for all this to happen there will be YAT (yet another test), this time an MRI of my heart and chest. This is part of the information required by the CAR-T programs so we’re proceeding with getting this done in the expectation of moving ahead.
While the Mayo Clinic would have been good, we’re quite relieved to likely be staying in Canada and with many relatives in the Toronto area that would help a lot.
An encouraging link: New program brings life-saving treatment to cancer patients