On the road again

Well, actually were flyingšŸ˜Šāœˆļø. Sorry, I seemed to have used the same title 2x in a row no less but I canā€™t think of anything better. šŸ˜œ

Toronto bound

Unlike the last trip the flight is packed! But, we’re on the 2 seat side of the plane so this is as good as it gets today.

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.

My Valentines Day Present

We’re back from Toronto at about 1am and after a snack and some unwinding it’s 3am before we’re in bed.

Surprisingly, I’m up at about 8:30 doing the usual stuff and planning day 1 of 14 in self isolation. The main activity this week for me is the Tour of Sufferlandria and I’m already a day behind. I’ll need to do 3 rides today to get back on track. No worries, I’ve got all day and then the “gift” arrives.

I get a call from St. Boniface MRI and there has been a cancelation today and can I make a 1pm appointment, which is in 2 hours. So a quick breakfast/lunch and off I go.

As I’m waiting I hear the receptionist calling to fill other cancelations. Surprisingly, many people turn down the opportunity. Given the typical wait time I’m not sure why folks are missing out on the opportunity.

The Tube

Apheresis

Apheresis, and more specifically leukaperisis is a fancy name for collecting your white blood cells and thatā€™s what today was all about.

Things started off with a bit of a bump due to COVID and exacerbated by the newer COVID variants being detected in the Toronto area. At the hospital entrance there is quite intense COVID screening. As a patient, Iā€˜m good to go. However, Shirley as a ā€œvisitorā€ or ā€œsupport personā€, not so much. The letter detailing my appointment today stated that she would be able to accompany me into the hospital and be allowed into a waiting area near where Iā€™d be treated. The idea being that she would be able to be closer and get me anything that I might need, like Starbucks šŸ™‚ .

However, the very official screener person was not having any of that. Without a very specific letter allowing Shirley to accompany me, he denied her entry. Plus she couldnā€™t wait anywhere in the hospital building and was asked to go outside where it was -8Ā°C (thankfully weā€™re not in Winnipeg where it was more like -35Ā°C). Fortunately, she was able to go across the street to Princess Margaret Hospital where she explained the situation and they allowed her to stay inside a sort of ā€œno manā€™s zoneā€ between the front doors and before you are actually in the hospital. Tears were involved.

Meanwhile Iā€™m off in the Toronto General to the blood lab for some more testing prior to the apheresis. This time I did get a bit lost and asked for some directions (not a guy thing). Blood work completed, itā€™s up to the 12th floor for the procedure (didnā€™t get lost this time). I check in and Iā€™m shown to my home for the next 4 1/2 hours.

The Machine

There is quite a bit of pre-work as the machine runs through itā€™s self-testing to ensure itā€™s operational and not leaking, thatā€™s a good thing. Then there is quite a complex procedural thing about the very special box that will be used to ship my blood product to the USA. More on that later.

Then Iā€™m hooked up. WARNING: if youā€™re squeamish, you might want to skip over the next couple of picture.

First there is the outflow. Itā€™s actually three tubes. One is my blood, another is feeding in an anticoagulant and the third is for something else that I canā€™t recall right now.

The Outflow

On the other side itā€™s the inflow. This is my blood minus the part that they are collecting plus an IV of some calcium to counteract the anticoagulant that has been mixed in with my blood on the outflow. Apparently the anticoagulant can cause some minor side effects, none of which happen to me.

The Inflow

So while Iā€™m in the chair I canā€™t move too much and Iā€™m limited to one handed texting and browsing social media etc.

Just hanging out for 1/2 a day

And when weā€™re all done, here is the result.

The white blood cells. Look sorta red eh?

This stuff is now being treated like gold. There is an extensive process that must be followed to the letter on a computer system about recording all the various numbers on the above bag, the box numbers, the serial number of the temperature monitoring device that will go into the box with the blood product and a whole lot more. The process takes four different people form various parts of the organization to witness the process and sign off on various steps. Once the box is fully sealed and Iā€™ve witnessed the process I can go. Shortly, a dedicated courier from Detroit will arrive and take possession of the box. He will then drive the box back to Detroit. From there Iā€™m not exactly sure where itā€™s going but itā€™s being worked on starting on Friday.

I get re-united with Shirley and we eat some of the lunch we packed and are picked up and driven back to my cousinā€™s house. Weā€™re both a little exhausted even though it was just a day of sitting around, Itā€™s been an emotional process even though weā€™ve done it once before and COVID has certainly not helped the situation. We get take-out Thai for dinner and relax with a movie before calling it a day.

Thankful that this phase is complete and that weā€™ll be returning home on Saturday. It will be approximately 4 weeks before we return to Toronto for the main event. Some time to relax and think and do some more (sort of) normal things.

Testing, testing, 1,2 1,2 testing

So Iā€™ve heard that some posts might be too detailed or too technical. Well, today will be more of a sight seeing tour and staying more lighthearted. By the way the title is a bit of a sound guy joke.

Todayā€™s testing is brought to you by Toronto General Hospital Peter Munk Cardiac Centre, literally directly across the street from Princess Margaret Cancer Centre.

12 stories in this part. Iā€™ll be on 10 & 3 today and 12 tomorrow.

Also across the street from Sick Kids Hostital where I did some time as a young lad when we lived in Toronto.

This is what it looked like in the late ā€˜50s when I was there. Now itā€™s been expanded from about 1/4 of a city block to the full block or more and very much higher. I remember my dad pulling up to that front entrance late in the evening when I was having some serious breathing issues.

First up is the Pulmonary Function test. No waiting and practically straight in. A nice Asian woman took me through the process of multiple tests each performed 3-4 times for comparison. ā€œBreath normally, big breath in, breath out slowly, more, more, more, OK breath normally. Big breath in, hold, hold, hold, breath out, breath in then out as hard and as fast as you can, then pantingā€. Lots of breathing. The technician and I get along well and have some casual conversation along the way. I think I passed.

Not me, but the setup looked exactly like this. Lots of huffing and puffing.

Next itā€™s off to the ā€œEcho Labā€ for the echocardiogram. Signage in the hospital is great and I donā€™t get lost dropping down 7 floors and navigating to a completely different area of this very large hospital. I check in, and again itā€™s almost no waiting. A nice German woman is conducting the test and itā€™s all business. ā€œChange here, BP, weight, height, lay down here, arm up, on your side, move closer, on your back, breath out and hold, breath in and holdā€. Lots of breathing today.

Still not me but it went like this
About 80 images captured plus video and audio

In short order all the testing for today is done, and itā€™s time for Starbucks and a ride back to our home base. And now, a couple of photographs for no particular reason. šŸ™‚

Princess Margaret Cancer Centre. The original older 6 story building has been extended back behind for a city block and then up for a few more floors, the shiny new looking part in the middle. The inside is all quite modern looking.
Some bushes in winter, just because.
A couple of guys hanging around, probably pretty famous or important dudes in the medical field.
Some downtown Toronto skyline as Iā€™m walking between tests.
Nice and sunny.

Tomorrow, itā€™s the T-cell collection for most of the day and an early 7am start. Wahoo!

Scheduling

The system is proving to be quite efficient and Iā€™m getting scheduled for several things while Iā€™m here in Toronto.

This morning we spent two hours talking with our very lovely social worker who was quite caring and supportive and is available to assist both Shirley and I in several areas.

While weā€™re talking, Iā€™m getting email notifications from the UHN system about some new appointments. They have a web portal that I can sign into and see most of my appointments and test results which is very cool. Far ahead of anything Iā€™ve experienced in Manitoba.

Tomorrow is a COVID test and dental exam. Wednesday is a pulmonary function test and a echocardiogram. Thursday is the big all day T-cell collection process via apheresis. So far, nothing on Friday and then we return home late on Saturday.

The trip is going well and weā€™re enjoying our stay with family instead of in a downtown hotel, which is pretty much a ghost town these days as Toronto is in full lockdown.

Overload

It was a long day. This might be short.

Arriving at Princess Margaret Hospital (PMH) at 12 noon we head off to find the blood lab which will access my port to draw the blood. This is is not the ā€œnormalā€ place where people without ports or PICC lines go, itā€™s a special area called ā€œAWAā€, the Ambulance Waiting Area. The AWA is where they stage people on stretchers awaiting ambulance transportation. And, oh yeah, they also collect blood from us ā€œspecialā€ people. 17 tubes of blood later Iā€˜m good to go for the ECG.

For the main part of the afternoon, from 1:30 to 5:45, we meet a lot of people, answer a lot of questions, hear a lot of information and sign a lot of consent forms.

The good news is after laying eyes on me they continue to think Iā€™m a good candidate for the CAR-T therapy and things are moving ahead. The main doctor explains the process, risks and benefits in quite a lot of detail. The CAR-T coordinator explains the logistics, talks some more about the company and product that they will be using to modify my T-cells (Kite Pharma Inc., and the YESCARTA product).

The blood work and ECG are just the tip of the iceberg in terms of testing that will be done prior to the infusion of the modified T-cells. Here are the ones I know about today. A tuberculosis test, a 2D echocardiogram of my heart, a pulmonary function test, a dental exam, an MRI of my brain and a PET scan.

This Thursday, February 11th is the appointment for the T-cell collection. The process is identical to the stem cell collection and is likely to take the better part of the day.

Itā€™s a lot to take in and it will take us a couple of days to absorb all the information and more fully comprehend what lies ahead. Thanks for standing with us.

Leaving on a jet plane

Our 1st COVID era flight, very strange. We arrive the requested 2hrs in advance and we are literally the only passengers in the terminal.

Ghost Town

Weā€™ve been here one hour and have not even seen a plane. Then 1 Air Canada flight arrives and lets of 20-30 people. Iā€™ve been on red-eye flights and late night flights and never seen the airport this empty. One restaurant is open, everything else is closed.

Not very many departures on the board

The Short List

I overheard the gate agent say there currently are 27 people on the flight which I guess is good for social distancing, and she just confirmed that we currently have the whole row to ourselves. Our plane has just arrived and only 35 people get off. The Boeing 737-700 has seating capacity for 143. I donā€™t think they are making money on these flights!

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. šŸ™

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.