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.

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.

New Direction

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

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.

Chest Follow-up and PET Scan

I followed up with my doctor regarding my chest “ache” and updated him on my current symptoms. His opinion at the time was that it could be a neuritis issue, aka nerve damage. The source of the nerve damage could be many but his best diagnosis is that nerves in the spine at the T5/T6 level are being impinged upon by something, like a herniated disk. An Xray would be able to determine if a disc is compressed, a CT scan would be required for a more detailed analysis to determine if there is spinal nerve damage. At this point ( Jan 4th) my doctor doesn’t have access to the Dec. 24th CT report.

PET Scanner at HSC

The PET scan today proceeded quite normally with no issues. The PET scan equipment is over 10 years old and has exceeded it’s life expectancy and is being replaced. The new unit is supposed to be up and running in the next 1-2 weeks. I hope I never see it. On the way out I snapped a photo of the unit I’ve been in a few times.

Later in the day I get a call back from my doctor. He has now reviewed the CT scan report and noted that they detected some damage “within the medial aspect of the right upper lobe”, aka a part of my lung and to a lesser extent similar damage to the left lobe that has been caused by the radiation treatments. This would seem to explain the chest “ache” on the right and left side. There is a possibility that it will heal further, which it will. I’m surprised that this issue has surfaced 90 days post-radiation but I’m told it can happen that way.

The CT report also indicated that the tumour as shrunk by approximately 50% from the May 6, 2020 CT scan, a very good thing.

Next stop is January 11th for the results of the PET scan.