Trial Terminates

 

August 10, 2021

Many days have passed but only a few significant things have happened.  I feel it best to describe my current physical status as one in danger as over the last period, I have continued to lose weight, energy, appetite, strength and ability to concentrate for any period of time.  So, how did I get here?

At the outset of the Trial, I started losing weight and that continued all the way through the trial. My strength etc. depreciated along with the weight loss.  My Trial Nurse recorded the regular loss but was at a loss about what to do about it.  My Dr was in the same position and the Trial continued.  I was offered Dietician help as it is part of the program.  I continued the Trial as planned and managed to get to my 3^rd cycle when it was time for the CT scan.  That happened July 19^th and went ahead as usual.  On the 20^th I received a call from Dr Jonker, early in the morning, advising me to stop taking the Trial drug.  The results of my CT showed growth in the Cancer and not a diminishment as expected.  DR Jonker thought through a couple of options for me – the options are becoming slim – and he settled on starting a Chemo Trial called Longsurf.  That would entail a home program for Chemo where I would take a pill in the morning and again in the evening for 5 days in a row, then two days off, followed by 5 days on the drug and the 14 days off the drug.

The list of side effects was familiar and the same effects that I was currently experiencing without any treatment.  That worried me.  I signed up and received my first box of pills to start the Longsurf Program. Interestingly, all arrangements and sign-up etc. was done without any real human contact.  I did receive a couple of calls but mostly this was done through email.  There was no agreement to sign even though it is a Trial.  On the start date I held back and notified my Dr as I was not convinced it would be beneficial to load up on drugs that would make me sicker than I already felt.  In that two-week period, I never stopped feeling badly and weak all around. My body has shrunk, and the muscles have disappeared into sagging skin.  I have been feeling worse as the days progressed.  I asked for some assistance from the Dietician and was triaged quickly and now I sit on a queue of 85 people with an opportunity date of a couple of weeks away.  I am depressed and feeling lost as to what the next steps will be.  I have a meeting scheduled with Dr Jonker on the 23^rd Sept but that seems like a long way off.

Today, at my daughter’s behest, I am meeting a Dr from the Centre for Health Innovation (CHI) to discuss my conundrum.  They are focused on the naturopath approach and may have some aides, approaches that might help me.  I have asked Tara-Lee to be on the call and to be on my medical support team as I need help.  I look forward to seeing how they might be able to help me.

Intervention with CHI

September 15, 2021

My initial visit with CHI was on August 9^th when I met Dr Flower, a Naturopath, who listened to my issues and need for some help to get some meat on my bones.  She then had a series of recommendation to change my diet a bit but mostly to add supplements to my daily routine.  It started with a healthy smoothie but adding some things I had never used in my diet and even some things I had never heard of.  Tara-Lee was a great help in this area.  So off I went to purchase, gather and find a list of pills, powders and oils.  So I started these various things in hope that they would increase my energy, get some exercise, increase my appetite and help me sleep.  Dr Flower is a kind lady and she gave me hope.

She also recommended that I speak to one of her Nurse Practitioner to talk about some Med Cannabis to help with sleep.  I met with her, and she explained the complex process of registering with a provider, being accepted, having blood tests and then having access to their products.  Jamie gave me some suggestions and finally I was able to order product.  It has arrived and I have tried it out on a few nights and saw some sleep gain.  After a few nights of adjusting the dose I got a very sore throat which I attributed to raw cannabis burning my throat.  I throttled back and used other meds for sleep.  The throat repaired itself after about 4 days.  Now I take the cannabis with a little water with no side effects.  However, I am unsure I am at my optimal dose as last night was not a good one at all.  Work in progress.

Dr Flower also recommended Acupuncture to deal with my stomach pressure, appetite, swelling in my legs, digestion etc.  Now this is a stretch for me but I was desperate for some relief and I forced myself to put aside my impression of acupuncture and give it a try.  Dr Giao was very kind, precise and listened well.  I have had several sessions now with some modicum of success although short lived.  He also got me onto a concoction of herbs and spices that tastes foul but is supposed to ease my digestive track and increase my appetite.  I am not doing the concoction anymore.

The final thing that Dr Flower recommended was a IV push of vitamins which was one of my targets as I felt that my system needed such a thing.  I have had several session with them on this process and it seems to help short term. 

As you can see from all of this, I have been on the road early mornings for quite a few appointments in Ottawa.  That is tiring and on one occasion I drove in with Freddi as I really wasn’t feeling well, and we wanted to vote in the early poles.  The upshot of all this attention and special treatments is that I am still in the same position as when I started.  I am weak, have no appetite (meaning I eat about a 6^th of what I used to eat), am still uncomfortable with food to the extent that I am sick after eating sometimes, still have not obtained a good sleeping pattern, have increased stomach pressure and pain after I eat.  Sounds like I have gained little ground with all this attention.  This leaves me feeling quite disappointed with the results of all the attention and expense as those expenses seem to be out of pocket.

Here we are, a long, beautiful summer has passed, and I have basically been restricted by my medical condition for the whole time.  Fortunately, I was able to participate in some of the fun activities at the lake with the kids.  Tara-Lee and her family have been here quite a bit through the summer, and we had a 10 day visit from Gray and his family.  I was great to have everyone together for that period. The laughter and significant cook events were fun (although I only tasted some of their creations) and watching the cousins bond again was a delight.  We also had a visit by Lucy’s daughter and her family as they were vacationing in the area.  It was great to see them and to see how the boys have grown.  My sister’s son, Greg has just been cleared with throat Cancer and he drove up with Lucy for a couple of day stay.  All of these family visits were fun and informative, and I appreciated them a bunch.  I participated where I felt I could but I did spend some time in my chair resting.

One additional thing, I started the home chemo treatment on Aug 26^th and it had little impact on how well or badly I was feeling.  I have finished the first go around last week so I expect another shipment from them soon.

Today I went to town for my CT Scan and that went without a hitch.  I am looking for some answers from the Dr about where we really are in this process when I meet him on Monday. Yes, I get to meet him in person!

By the way, I am still waiting to hear from the team at TOH who run the Dietician program.

I will leave you now and thank you for taking the time to read this Blog.  I wish I had more energy to address this more often.  My track record has not been good.  Be well and safe.

TTK Trial – Initial Cycle

 

June 3, 2021

In my last blog I left it at the point where I was awaiting a response to see if I would be accepted into this drug trial.  On May 26^th I received confirmation of my participation.  That meant that I would start the trial on May 27^th with a 12 hour stay in the hospital in the Cancer Trial area of the Chemotherapy Unit at the Ottawa Hospital – General Campus. The long stay was intended to monitor the drug absorption into my system and to monitor my vitals and blood reaction to the drug over time.  After the initial day I was monitored frequently with the same procedures and saw my Dr. more often than before.  This will continue for 28 days and then there will be another 12-hour day of monitoring at the end of the cycle. 

On my first day I settled into a chair around 8 AM in the Pharmacology Pod at the General Hospital for my long stay.  The first hour or so was a busy time as blood was drawn, BP was taken, ECG was done, and vitals recorded.  After all of that I was given my 28 days of pills for the trial.  Each day I take 4 pills at the same time of day.  I must fast for 2 hours before and 1 hour after taking the pills.  During this first day they drew blood 8 times for measurement and baseline establishment.  They took my vitals at various intervals during the day.  I managed to amuse myself at the beginning watching and soaking up the process.  After all of that I resorted to reading, sleeping, doing some email, watching Netflix, and generally pissing away time.  As the day passed, the patients left the building and a small crew of nurses stayed behind to finish their shifts at 8 PM.  Unfortunately, I had brought along the wrong earphones so I could not watch movies until most of the patients left.  I was also responsible for feeding myself during the day, so I had a small, packed lunch and some nibbles for the rest of the day.   During this day I was also monitored for side effects and happily I was able to indicate that I was experiencing none of the typical side effects.

My first return visit to the hospital was 8 AM the following morning.  I did blood samples and visited with Lena to go through several questions about how I was feeling etc.  Only then was I allowed to take my second dose of pills.  Once that was complete, I was on my way for a couple of days to work through the trial process.

June 19, 2021

Three weeks has passed and now I can outline some of the changes that have happened since the start of the Trial.  As I review my Drug Diary listing (who knew I would have a drug diary in my life) I see the full gamut of symptoms from this drug.  But I have not told you what this drug is so I will start at the beginning.  The drug is called CFI-402257 and it is designed as an oral drug that blocks TTK protein kinase activity. 

“TTK is a protein that is important in regulating cell growth, and cell death, and in ensuring proper cell division.  Many tumours are shown to make too much TTK.  When there is too much TTK produced, it is believed to contribute to uncontrolled cancer cell growth and cell division leading to additional mutations in cancer cells.  Therefore, it is believed that blocking this protein from working will lead to cancer cell death, stopping tumours from growing or shrinking them” – note quote is an excerpt from my 16 page consent form to join the Trial.

Obviously, with such a drug being infused into your system, there will be some effects that the body will demonstrate that are referred to as side effects.  These side effects are list in a long list but the key ones that have affected me over the period have been Nausea, Diarrhea, low WBC, fatigue or malaise, and reduced appetite.   I have experienced all of these except for low WBC.  My platelets are remaining high during the many blood tests that I have had.  In the first week of the trial, I lost 10 lbs in weight and felt weakened by that change.  My appetite has been low, and my eating habits have changed to that of a small bird.  I am still struggling to gain back any of my lost weight.  I have had some terrible nights due to a trial with a sleep aid while going through these other changes. I have spoken with the DR about these effects and we agreed that I best abandon the sleep aid for the time being.  He will prescribe a new choice sometime in the future. Otherwise, I have managed the nausea with meds, but I am trying to get along now without those extra drugs.  I limited the use of nausea meds to early in the day.  I have had one or two really good days when I felt almost normal.  Unfortunately, my usual state is one of low energy, listlessness, and general fatigue.

That, in a nutshell, is how the trial is affecting me these days.  I find some peaceful times with naps and sleep in front of PGA Golf and treasure those moments.  The real effects, those that hinder the cancer growth, will not be known until my third cycle of the trial when I have a CT Scan and compare it to my CT from just prior to the start of the trial.  This upcoming week id the end of my first cycle and I will spend Wednesday (June 23, 2021) at the hospital for another 12-hour marathon of testing after I take the drug in the morning.  This time I will have the right earphones so I can watch movies at my leisure without disturbing other patients.  The next day I start cycle 2 without a 12 hours stay in the hospital.

In all of this I have still managed to uphold my end of the boat business with Bruce.  We have delivered most of our boats to our clients, dealt with some interventions and miscellaneous requests on top of the regular spring business. It went pretty smoothly all things considered.

Me, watching Longmire episodes!

In other news, Freddi is now fully vaccinated as she managed to get an appointment in Alexandrea this last week.  She has had a couple of days where she felt like she was hit by a truck, but she is coming out of that very well.  We are now able to travel and are planning a trip to visit our son and his family in Pemberton BC in a few weeks.  We have not seen them since January 2020.

Today is a sunny Saturday with a coolish wind and we are all together here at Lake Bernard.  What else could we ask for as we enjoy the location, weather and company.  Thank you for dropping in and I will update this Blog as I settle into my second cycle when I hope to find a new point of balance for third old body.

Be well and stay safe ……

Round 5 Sessions 15 through 18 - an update

 I have resurfaced from my period of hiding from everyone and everything during the COVID lockdowns and restrictions.  In the last few months, we have done extraordinarily little other than make it to the next day or so it seems.  Freddi and I have been isolating here at Lake Bernard which makes for comfortable surroundings.  We have only ventured out to attend Dr appts., get vaccinated and to do necessary groceries or supplies at the drug store or the local hardware outlet.  We have had some visits with Tara-Lee and family but even those visits have been encroached on by the most recent lockdowns and restrictions in Ontario and Quebec.  This isolation is hard on people as we are social animals who live and learn with and through others and that privilege has been denied with the COVID restrictions.  I recognize the need and benefit of such restrictions but still feel the pressure of just two people coexisting without interactions with others.  I miss my friends and family.  I look forward, optimistically, to the removal of restrictions and the return or the establishment of a more stable and open norm for Canadians.   I hope that the summer will be the time of that transition.

Freddi is working from home and we are thankful for our transition to a more stable and consistent Internet service out here in the country.  Her work is interesting and moving quickly so she is learning new skills and sharpening old ones as she liaises with the company’s clients.  Our dining space is now her office, and she has a nice view of the lake as she talks on the phone or attends zoom calls.

I have been neglecting my desire to write on this blog as things were just basically the “same shit, different day”.  My 3-week treatment plans were just rolling along with few changes or thought.  My health after the Chemo treatments usually took about a week to improve.  That allowed me the better part of 2 weeks to recover fully before the next treatment.  And, as usual, my CT scans were scheduled on a 3-month cycle. Sessions 15 through 18 were all at status quo and unremarkable.  The combination of unremarkable health conditions and the malaise brought on by COVID lockdowns left be devoid of energy to address this blog.  Unfortunately, that could be said about anything which looked like a “task” and extraordinarily little was accomplished.  We had some nice weather in March and early April, so I managed to get some outdoor work accomplished.

However, recently my health has taken a right turn and I am finding myself on a new route to wherever I am going.  I had a CT scan on April 8^th for a review with my Dr on April 19^th.  At that phone meeting the Dr informed me that despite the treatments my “masses” have grown in both my liver and my lungs.  That lead to the statement I have been expecting from the Dr.  “This treatment is no longer working” was his direct comment to me.  We then discussed the next step options for me.  He laid out three simple options which included a different chemo mixture, a daily pill treatment and perhaps looking at a trial using immunotherapy.  I quickly migrated to the third option as I have been thinking about that option for a while.  We agreed that the Dr would seek out an opportunity in an immunotherapy trial and we would chat again in 2 weeks.

I received an appointment request for May 4 to further discuss the next steps.  Dr Jonker went through the options once again and advised me that getting a spot on one of the immunotherapy trials was not likely going to happen.  There are too few open spots on those trials and far too many people waiting for a spot.  He had another option which he laid out for me.  Apparently, there was a spot available on a “drug” trial.  The trial was in phase one, but it had already had some results and fairly good results to date.  This University Hospital Network (UHN) trial is focused on TTK and is administered through a pill dosage every day for 28 days in a cycle.  The drug messes with the protein levels and that is a disrupter in the development of Cancer cells.  It is intended to reduce the size of masses.  Being a trial there is lots of monitoring and attention by Dr Jonker to ensure that I (as a patient) am doing well or OK for now throughout the trial.  Dr Jonker introduced me to Lena who is the Clinical Research Nurse for the trial at TOH.  She spent a good deal of time giving me background info and describing what might happen should I join the trial.  She handed me a 16-page Study Information and Consent Form to take home to read and understand.  If I was acceptant of the trial and the associated risks and benefits, then all I needed to do was sign and she could go ahead with an assessment of my health.  As one would expect there are criteria to meet before acceptance on the trial by UHN.  After talking it through with family I signed the consent form and asked to move to the next steps.  That meant a few hours of testing and assessing which was done on May 6.  I now have a CT scheduled – to establish a baseline for the observed masses – for May 14^th and a potential start date for May 26^th.  The beginning of the trial requires me to be at the hospital for a full 12 hours as they administer the first dose as they want to measure the rate of absorption into my system hourly and maintain a vigilant observation of my vitals.  The commencement will only happen once the UHN accepts me as a participant.

How do I feel about this stage in my challenge of dealing with Cancer?  That is a good but hard question to answer.  I am feeling a little bit of remorse as I recognize that where I am in my Cancer is well advanced and my options are not quite as wide as I had grown to believe.  It was, and still is, a funny feeling of fragility and hearing a door close somewhere.  It was a recognition that my advanced Cancer had made ground even though we were peppering it with poison for the last couple of years.  I also recognize that I have lived beyond the estimated expiry date allowing me more time with my family and friends.  Thinking of one’s own mortality is quite sobering.  But this new steps or stage in my story has forced me to do that.  Putting that aside, I find myself interested and hopeful that the drug will be able to reduce my masses over time.  It seems to be focused on breast Cancer and colorectal Cancer patients at this time.

Interesting fact:  no matter where the Cancer is in your body organs of bones etc., the markers for the Cancer never vary from its origin.  For example, my Cancer started in my colon and is now located only in my liver, lungs and some in the peritoneal lining of my abdominal area – my colon was cleared out back in August 2015.  However, my Cancer is still recognized and treated as a colorectal Cancer.  I did not know this before a discussion with Lena.

The next step for me is be accepted and start a regime of a pill a day with close monitoring for the first cycle and decreased hospital visits as I progress through the cycles.  The reported side effects of this drug have been GI toxicity, causing diarrhea and low blood counts, suppressing immunity.  Being no stranger to these effects I feel that I am equipped to deal with them.  These still leave me a little anxious as I do not know this devil.  However, I will try to make this work and be hopeful that the results will be positive and show some negative growth of the Cancer masses.

That is where things stand, and the next few weeks will be interesting to say the least.  In the interim I will continue to do my outside work, work with my Lightning Tree consultants, and deliver boats to residents of Lake Bernard.  Those activities will keep my mind off this challenge for a while.  I will update this blog shortly as we start participating in the trial.

Thank you for dropping by and I do hope that if you have questions or observations, that you will not hesitate to contact me through my email account.

Stay safe and be well …..

 

 

Round 5 Sessions 12 through 14

 
Today (Jan 22) is yet another dull day on Lake Bernard.  We have been without sun for quite some time.  The weather is an important subject around the house as we are trying to maintain a skating rink on the lake.  The weather affects this project in many ways.  Unlike a rink in the city or simply on dry land, Lake skating rinks come with several different challenges.  Sometimes, when the weather is too warm, the ice sinks and water pushes onto the ice surface from below.  That causes uneven patches as they freeze and sometimes leaves areas with crackle snow that is almost ice but is simply hard snow. When we have a good solid freeze, the ice seems to remain stable and we can maintain clear patches that allow us to see the bottom of the lake.  That clear ice is great to skate on.  However, there is a nemesis out there called snow.  Aside from the obvious work required to remove the snow, it also adds weight to the ice and causes it to sink more.  Therefore, bringing water back to the surface.  That is a challenge when trying to maintain a flat level surface on the rink.  All this to say that I have a project that I have been attending to since Christmas.  We were so fortunate this year to have a good freeze with clear ice (no snow) shortly before the Christmas period.  Several families around the lake set up different sizes of rinks close to their cottage and in some cases, they maintained paths to connect rinks to allow for some social distancing on skates while visiting our neighbours.  It was a fun time as the kids had access to large areas for skating.  From there I decided I would try to maintain the rink so the kids could have access when they were here.

I mentioned Christmas and I am happy to report that we were able to have Christmas here at the lake with Tara-Lee, Brehn, Kaia and Logan.  Unfortunately, we were unable to connect with Gray, Bree and Skylar in person due to COVID restrictions and supporting non-travel advisories during the COVID period.  This was particularly hard as Bree lost her Father (Larry) to a heart attach while he was riding his bike just before the Christmas period.  He was awfully close to his two children and a great husband to Bree’s Mum (Mary).  This was a shock to all of us and we were feeling extremely disappointed that we could not visit and support Bree during this difficult adjustment.  We maintained connectivity through the phone and Face Time but that is not what is needed at a time like that.  We wanted to help but we were unable to provide the support that is needed when one loses a vibrant individual and a loving parent. 

Our Christmas here at the lake was a rowdy one as Kaia was above excited about all of Christmas and Logan had learned to communicate by screaming at us and banging tin dishes together to amuse himself.  But we settled into our routine and we had a nice several days visit through Christmas.  I must say for all the promises to restrict spending and purchases for others our Christmas tree was no less laden than previous years.  The gifts were all thoughtful and had a story behind each one, so the day was spent opening gifts over a long period of time.  We had breakfast at 1 PM and dinner at 8 PM.   It was a fun day and most of it was inside.  On the other days of the visit the kids spent a good deal of time outdoors.  Particularly after Christmas as there was skating, cross-country skiing, some sliding and even some attempts at wee ones on downhill slopes.  Great fun for all.

Other than that, my life has been routine as I have mentioned in past entries.  It seems the only changes are in my health and employment status.  As of January 19^th, I am officially and ex-WestJetter.  As of that date all the Airport WestJet staff were permanently laid off and WestJet started operations with outsourced resources.  It was a sad day for many of us who loved and respected our jobs and guests on the airline.  Many of my colleagues had worked for many years whereas I was only employed by WestJet for 3+ years.  WestJet made a reasonable offer to all departing employees and payout was set for the 19^th.  Most of our team have found new and interesting employment in other businesses and the long wind down is now complete.  I will miss my WestJet people as with time communications and desire to get together will likely wane as people work with new and interesting folks.  I do hope that once this Pandemic thing is out of the way we will be permitted to have a gathering of the WestJet Airport staff in some place that sells good food and alcohol.  It will be a party for sure.  I am currently unemployed and not too interested in starting something new unless it is attractive and allows me to interact with good folks like my WestJetters and our guests.

The other thing that has changed is my health.  Of late, I have been feeling a little off and experiencing significant indigestion when I enjoy meals or rich food.  I have managed to maintain a balance by using over the counter drugs like Tums.  Nighttime has been a challenge as my neuropathy and a pesky hip combination tends to keep me awake and uncomfortable.  This is affecting my sleep and the result is that I am a bit cranky during the day.  I mentioned this to my Dr on Jan 13^th and was told that I should try Zantac as it was stronger than Tums but not a prescribed drug.  However, the Dr had news for me as my CT Scan (Jan 6) had a comment from the Radiologist that was not routine.  It went like this: “There is however suggestion of newly developed peritoneal carcinomatosis with multiple ill-defined soft tissue densities noted within the mesenteric fat.” 

Ok so I did not know I had “mesenteric fat” and that set me off.  I try to maintain my weight, but I guess even good beef has its share of fat.  I was pleased that the densities were ill-defined, and I asked the Dr what that meant.  I was told that it meant it was not defined as a cancer spot at this time.  It requires some monitoring, and my next CT (in about 6 weeks) should shed some light on what these are and what, if anything, we should do about them.  We agreed that the right course of action was to maintain the status quo in terms of treatment as we disqualified three other options that were offered. They were to increase frequency of my treatments, change the cocktail to a drug that had given me neuropathy in the past and move to a daily pill for Chemo which would change my side effects in a negative fashion. This all came as a heads-up as we know that things will deteriorate as my treatment prognosis is “maintenance” and not “elimination” of the active cancerous cells.  In the interim, I will bide my time and wait to see what happens with the next CT.  I am OK with that and will carry on as normal as possible.

Finally, today (Jan 24) is a gorgeous sunny and cold day and I will try to do some repair to our rink as there is no snow in the forecast for several days. 

I am frustrated as we had to cancel our planned visit to Kauai in February due to COVID existence and the associated difficulties imposed by the travel restrictions of both Kauai and Canada.  I know I am not alone with my frustration and I am starting to lose hope that a visit to warmer climate is in our future this year.  Marriott, unfortunately, has moved my planned two weeks to Interval International where I am able to access any of their 15K properties over the next two years.  I guess that is a safe place for the weeks to be when we have so many uncertainties about when travel will become accessible for people of all nations.  So far, we have lost 3 weeks’ vacation due to expiry and our inability to travel during this period.  Those three weeks are gone forever.  I am happy that we did not lose our two weeks with Marriott as we plan on using them as soon as we feel confident that travel is OK.

I will take my leave today and send along best wishes for each one of you to make 2021 a great year.

Thank you for dropping in and please feel free to contact me should you have any questions or thoughts about this content.   Be well and stay safe ……..