Tag: CAR-T

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Update and News

A small update on me and some exciting news about cancer treatments in Winnipeg.

I’m doing fine from a lymphoma cancer perspective. I have no signs or symptoms of anything that might be worrisome, and as we know worrying is pointless anyway 😊. My next checkup is March 27, 2023 which is almost exactly two years after the CAR-T treatment in Toronto. I’ve been told that the two year mark is a bit of a turning point as statistically the success rate of the treatment increases a fair bit. I’ll take that!

On the news front it’s literally news as in an announcements that CAR-T treatments will be available in Winnipeg starting this spring. This will be such good news for those needing treatments who will no longer be required to travel and be able to remain close to their family and support networks. This support is a huge factor is the success of the treatments in my mind. We were so fortunate and blessed to have and abundance of very supportive relatives in the Toronto area during our 75 days away from home.

Some links to the announcement…

New specialized cancer treatment program coming to Manitoba

Manitoba provides $6.6M for new cancer therapy program.

When I had my CAR-T treatment my T cells were sent to a lab in California, USA for “manufacturing”, the process of genetically modifying the T cells to attack the cancer cells and growing several million of these modified T-cells for infusion back into me. The logistics and costs of this process are quite amazing and expensive.

However, Canada is getting in the game with CAR-T manufacturing in B.C!

First made-in-Canada CAR-T cell therapy for cancer shows promise in clinical trial

The new trial, called Canadian-Led Immunotherapies in Cancer-01 (CLIC-01), is the first to manufacture CAR-T therapy in Canada. It uses a different kind of cell manufacturing that opens the door to less expensive and more equitable treatment.

So thankful for our medical system and CAR-T, it’s a life saver.

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One Year Anniversary

Today, March 17th is the one year anniversary of my CAR-T infusion treatment for Lymphoma cancer.

Certainly a landmark event in our lives, you might say “life changing” and you’d be correct. So much has happened in the last year. First off, I’m in full remission and feeling very well. The last two PET scans were good and no further treatment has been required since the CAR-T.

Looking back, it seems like a long time ago, and like yesterday all at the same time. The 75 days we spent in Toronto to get this life saving procedure were challenging for sure but I think my side effects from the treatment were quite mild and minimal compared to what I’ve read and what we were told about all the things that “might” happen.

Of course, as all cancer patients know, it changes you mentally, physically and spiritually. I don’t think anyone gets off scot-free. A year later I still think about the cancer daily, but not as often or as intensely. Physically, the time in the hospital, the chemotherapy, and the CAR-T itself do a bit of a number on your body, both good things and some not so good things. At this point my strength and stamina are approaching my 2018 pre-cancer levels. Treatments whack your blood chemistry quite severely and while it’s taken a year, my blood work numbers are starting to climb closer to the lower end of normal.

Spiritually, both Shirley and I have deepened our faith through this time. We experienced God’s favour, mercy, and grace and know without doubt that He is faithful and trustworthy.

The anchor holds in spite of the storm.

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Day Zero – The point of no return

It’s 1pm and the preliminaries are getting under way. I’m now hooked up to the saline IV until after the infusion which is currently scheduled for 3pm.

The overnight sleep was in fits and starts as one might expect as I got used to the room, the floor and the procedures. Last vitals were around 9:30pm and the next at 2am. As I’m the new guy they didn’t need me to wake up for the usual BP, temperature and pulse oxygen. From here on out there will be a 2am wake up call. 🙁

In addition to that there are night staff just walking in and looking around to see that you have not escaped and appear to be alive. I think at some point I’ll be able to tune out those quick in & out checks.

6am, we’re up and by “we” I mean me and my room mate. Lights on and we both get the full battery of tests, BP, Temp PulseOX, blood work, plus the questions to ensure you’re not cognitively compromised and the hand writing sample. I’m told this will be the new standard every 8 hours (or more).

After that I get a bit more sleep as we turn off the lights and just hangout in the room. Breakfast arrives while I‘m dozing and I’m on clear liquids & jello. Not sure why. In a while Shirley will arrive for a visit and she is bringing treats like Starbucks☕️ and supplies from “home” (aka Kathy’s).

Happy Camper (?)

A full lunch arrives and it’s quite good! Hot things arrive hot, really hot!

At one point in the morning a team from the ICU at Mt. Sinai (next door to PMH and connected by a walkway) show up as promised , to check in. Two young doctors introduce themselves and say they will be getting familiar with my chart and following up daily. It’s good that’s they are prepared, and I hope to never see them at their place of work. 😜

So, by about 4:45pm the infusion process is complete. There were no problems and I’m currently feeling fine, but tired, mainly due to the Benadryl and some due to the emotions of the process and the day. More later tonight or tomorrow. So thankful for the miracle.

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On the road again

Well, not today but a little sooner than expected.

We received a call from Andrew, our CAR-T coordinator, this morning and we have the date for our return to Toronto!

We will fly out on March 4th and things start happening on March 5th at 8:30 a.m.. First up is a PET scan as a pre-treatment baseline. I’m sure the schedule will unfold over the next several days. Their online patient portal is very good and I get emails about any new appointments or test results. I expect to know my hospital admission date pretty soon.

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Getting Real

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.

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I Believe

In the ’90s I listened to and most likely sang this song in church from Ron Kenoly’s 1992 album, Lift Him Up, “Whose Report Shall You Believe?”. Just prior to today’s meeting with the oncologist I was thinking about this song. Part of the lyrics are:

His report says
I am healed
His report says
I am filled
His report says
I am free
His report says victory

Whose report will I believe? I will believe the report of the Lord!

Today’s report from the oncologist on the PET scan results was not positive. There is increased activity in the tumour area and a spread from the left to the right side of the chest since the PET scan on October 25, 2020.

On a positive note there are several treatment options available at this point. Next Monday, January 18th, in the morning there are grand rounds for Lymphoma where all the top specialists will meet and review my entire case to determine the best treatment plan going forward. We will know more by the end of day Monday. At a high level, here are the options that we briefly discussed today.

  1. More chemotherapy, some different drugs that I have not experienced yet.
  2. CAR-T Cell Therapy at the Mayo Clinic in Rochester, Minnesota
  3. Immunotherapy where specialized drugs activate your immune system to kill cancer cells.

In today’s discussions they seemed to be leaning towards the Mayo Clinic option. There are several steps to make this one happen. First, the group meeting on Monday needs to agree and recommend that this is the best option. Next, would be to secure Manitoba government funding approval to get the costs covered. Preliminary estimate was a one week trip for the initial work and about a one month stay to finish the therapy. In addition, the Mayo Clinic has to review my case and accept me for treatment. My oncologist was fairly positive about this part due to my otherwise good health.

We thought the journey would end today but there is still some more to do. Thanks for hanging in there with us. We so appreciate your care, concern and prayers.