Episode 0 – Ted’s Story Part 1

Episode 0 – Ted’s Story Part 1

Episode 0 – Ted’s Story

Welcome to this special episode. I had originally planned to tell my story much later in the process. I was hesitant to make it all because I do not want to make the channel about me; instead, the purpose is to make the channel about what I have learned and present it in a way that saves Ime for others diagnosed with Glioblastoma in finding the research I have followed and to present alternaIves for consideraIon.

However, due to my personal circumstances, all that has occurred to date, and the path I have followed I was encouraged by my family and friends to include this informaIon from the outset.

Upon reflecIon, I believe you should know my whole story, know where I have been, what I have done, and the direcIon I am following. I think this will give you the complete picture and some context with my situaIon. This disease is horrid and I know firsthand how it feels to be given the news. There is very liQle in the way of encouragement out there and perhaps some of this informaIon will be helpful and bring some hope or potenIal opIons.

Because I was diagnosed with GBM out of the blue – probably just like you – my goal is to offer some insight to people who have been diagnosed with this horrible disease and feel completely isolated and bewildered. Perhaps this will provide some shortcuts for you or at least some concise informaIon based on my first-hand experience.

I found that there was very liQle informaIon readily available and I have been extremely fortunate to have met some very special and helpful people, doctors, professionals, researchers, authors, and countless others who have all contributed to geWng me where I am today. I know I am extremely blessed and My Story is meant to provide some of that background.

If you are anything like me you are probably confused and frightened by this diagnosis. If you have specific quesIons for which you are seeking immediate informaIon I would encourage you to go directly to the list of Episodes I have created and posted on my site and YouTube Channel. They may deal more directly and at length to your specific quesIons or topics and you may wish to watch the remainder of this Episode a[er a few Episodes. If on the other hand, you want some overall background that will give you my background and more gradually point you to some specific areas while providing some context then please listen to the rest of My Story.

Whichever you choose I want you to know that I feel your sense of being alarmed and totally helpless and that I had these same feelings upon hearing my diagnosis.
I hope this informaIon helps and I wish you the very best as you move from step to step in this process. Blessings to you.

As with many of you, my family has faced considerable adversity. I will not go into the details; just know I am a single father with sole custody of my three terrific children and I am fully invested in their lives. A[er a busy school year in 2018, I was able to take the kids on a vacaIon to California. We had some fun at theme parks and some relaxing in the sunshine. I began geWng some mild headaches which were very abnormal for me a[er some of the rides. I chalked it up as geWng older at the Ime. I also had some occasional pain in my upper teeth. I found this only a slight irritant. When we returned home I had a regular denIst appointment booked and there were no issues. I also had a rouIne eye exam in August which

did not detect the Glioblastoma as can someImes occur. I didn’t have any other issues and the teeth discomfort and headaches seemed to have subsided.

In September 2018 I was a chaperone on a field trip with the school and we went to a Science Center that was busy and noisy. We had some physical acIvity during the day and this jostling again caused me to start geWng another headache. By the end of the a[ernoon, the headache was very unpleasant. By the next morning, it had subsided and I was feeling okay. Later in September, I fell on my backside at an ice rink. A[er that, I started geWng very bad headaches that were lasIng longer, would not go away with headache medicaIon, and were geWng more intense. At no Ime while this was going on did I put any of these pieces together to think they were one common issue. These were just isolated cases of headaches and discomfort that we all deal with from Ime to Ime. As the days went on I started wondering if I had hit my head on the ice because the headaches were progressively geWng worse and I was experiencing nausea. I started not being able to keep food down at all so we went to the Hospital Emergency. They looked me over and said the headaches should subside and sent me home.

The headaches did not go away and conInued day and night. I was very nauseous now and keeping solids or liquids down was a problem. Another two weeks had passed and the intense headaches, nausea, and inability to eat and drink were very concerning. We went to the hospital again with the same result. Another week went by and the headache intensity had increased to another level. It felt like my eyeballs were going to pop out of my head and I was not keeping any food or drink down. We went to my doctors’ office and he asked me to try another possible remedy that did not work. Throughout this ordeal I had tried massage therapy and chiropracIc care mulIple Imes, however; the pain conInued and became unbearable. We went back to the Hospital Emergency the next day. They did some bloodwork and then they were going to send me home again; but, this Ime we insisted on a scan. The hospital did not have an MRI so they gave me a CT Scan. A[er a couple of hours, the doctor came back to my bed and said he was very sorry, but I had a large brain tumor.

This was shocking! How could this be … what did this mean? He said he did not know but it was large. He asked if I had experienced any seizures, blurry vision, or other symptoms. I said no, just the ones we had reported several Imes – extreme headaches, nausea, no ability to take in food or water. By now I had lost 20 pounds. They were going to send me home for the night but we insisted we stay the night. They started me on Dexamethasone which is a steroid to reduce the swelling in my brain. Over Ime this reduced my headache to where it was bearable, and I was able to eat and drink again. They made arrangements that night, due to the seriousness of the situaIon that I would be going to see a Neurologist the next morning.

The neurologist said the tumor was large and he would need to do surgery as soon as possible. My tumor was in my right, front, temporal lobe and was about the size of a large egg. This tumor had squished and pushed my brain in several areas, including across the midline. The doctor would know more about the tumor type and its spread a[er the surgery. It was such a severe situaIon that they scheduled the surgery just 6 days later – this happened to be Halloween 2018 which made it even more strange. A[er meeIng the neurologist I was brought back to the original Hospital and spent the next five days there. While there we had a lawyer draw up my updated Last Will and Testament as well as a Power of AQorney and a RepresentaIon Agreement for the care of my kids as we did not know if I would survive the surgery or what shape I would be in following the surgery.

My family and friends came to visit me a lot which was great to see them. My Dad virtually never le[ my side and was instrumental in ensuring I was receiving the care I needed when I needed it. My brother stayed by my side every night and we talked a great deal about growing up and all the memories we had together and took comfort in these moments. My family and friends that came by to visit all did their best to stay posiIve but, we all knew the reality of what was happening. It was absolutely crushing on my kids who had already been through so much in their lives and now had their only parent in the hospital and about to undergo brain

surgery. Unfortunately, it was my eldest daughter’s first semester of University as well, so this made things extra difficult for her. I talked with each of my kids and there were lots of hugs, kisses, and tears.

They transferred me by ambulance to the hospital that specialized in neurology where I underwent a pre-surgery MRI and then returned to the original hospital. The MRI indicated that the tumor was very likely a Glioblastoma MulIforme Grade 4 Tumor. We had no idea at the Ime what this meant but it was sobering news to hear the median survival with surgery, radiaIon, and chemotherapy was about a year if everything went well. He said we would know more a[er the surgery. This was brutal news and it hit hard on everyone; but, we were determined to do all we could to baQle the disease. The first step would be gaining some strength back for the surgery and then making it through the surgery.

I was able to eat and drink during the lead-up to the surgery and to do some research on Glioblastoma. Everywhere we looked the informaIon pointed that Glioblastoma was always fatal and that you should get your affairs in order. There were a few cases where some procedures had very rare cases of success with a single paIent here or there but nothing definiIve or reproducible. There were some clinical trials that did not look too hopeful but may push research forward so others may benefit in the future.

My Mom was with my kids the day of the surgery

Episode 0 – Ted’s Story Part 2

Episode 0 – Ted’s Story Part 2

and we had done our prayers, hugs, and kisses before she took the kids home. I gave my three kids a special talk, lots of hugs, kisses, tears, and prayer, and said goodbye as they le[ for the night before my surgery. The morning of the surgery I said goodbye to my Dad and brother as I was being wheeled down the corridor towards the operaIng room. They told me some friends were keeping a vigil and would be waiIng outside. We said a prayer and I was whisked away into the operaIng room.

There were at least four or five people in the OR and they wheeled me up to the operaIng table. I slid across onto the narrow operaIng table and the anesthesiologist explained what was going to happen to put me out for the surgery and that he would be there to monitor the situaIon. My surgeon asked if I had any quesIons and then they asked me to count in my head. I began a final prayer before the procedure, and I do not remember if I completed it.

I woke up in the neurosurgery post-operaIve room where I had a nurse beside me conInuously. They asked some quesIons and although I was groggy, I seemed to be able to think and move which was an answer to my prayers. A[er several hours I was able to see my Dad and ask how the surgery went. I was told that they were able to remove all the tumor they could see which was great news. My Dad and brother were keeping my family and friends up to date and everyone was relieved that I had made it through the surgery.

I was in the hospital overnight and the first night was not pleasant. I was in a room with four other people that included some troubled souls. One of the nurses checking on me kept trying to give me morphine over and over again that I did not want as the Advil and Tylenol were working fine. The next day I heard the neurosurgeon come in and speak to each of the other paIents in the room. He let them know their surgery had gone well and they would be on the mend. When it was my Ime he came into my curtain area to tell me the bad news. It was definitely, Glioblastoma MulIforme and although the surgery went very well, and they were able to remove all of the tumor they could see it is a terrible diagnosis. I asked how long I had. He said with treatment including radiaIon and chemotherapy I would have about a year of median survival. As a single Dad this

news was devastaIng. I would miss my kids’ life stages and accomplishments from High School GraduaIon, University or College, their weddings, and any grandkids. I would not be there to help them in life and felt I was failing them. I remember tears at this point. I asked if there was anything else, I could do? There were maybe a few clinical trials but there was nothing that had good possibiliIes. As he walked away I knew I had to do all I could to fight this disease so I could be there for my kids, family, and friends. I would be able to go home as long as I could get a few things accomplished. I had to be able to go for a short walk on my own, I had to get cleaned up and dressed and go to the bathroom on my own. Shortly a[er seeing the doctor, my family came to the hospital to see me and take me home.

When I arrived home, I would be sleeping with a family member right beside me every night to ensure I was okay and there were no effects from the surgery that the hospital had asked us to watch. I began researching immediately. I was searching for everything I could find about GBM and what the next steps were.

The next day which was one day a[er being released from the hospital my brother Jamie had asked a friend of his to come by and speak to us about the Keto diet as a possible opIon to help with cancer. His name is Kevin Dornan and he made Ime for us immediately to get me started on the Keto diet for which I am very grateful. His Dad (who is a doctor) was baQling cancer and when my brother’s friend had looked into Keto in great detail over many months he found that the Keto diet may help fight the cancer. In their case, it had incredible and unexpected results. I began to follow the diet the next day. In hindsight I was doing the diet I am on today incorrectly for the first 20 days – but it was a start in the right direcIon. Part of my miracle in the making.

Everyone was looking into different opIons and while I had found and was reading the book “Keto for Cancer” by Miriam Kalamian others were looking at alternaIves. You should watch my episodes on Keto for Cancer – a link to the book is on my website under Recommended Products. My son found a possible treatment opIon that looked the most promising of all the opIons we had found to date and we began the process of looking into this possibility. It was called Gama Knife by Dr. Duma. Part of this process entailed going back to the hospital where I had my surgery to pick up two CDs with MRI scans on them. One had the pre-operaIon

and the other had the post-operaIon MRI. We le[ almost immediately for the hospital which was about 40 minutes away.

While we were waiIng to be helped to get the CDs with the MRI Scans we turned and faced away from the nursing staIon and the elevator doors opened. My surgeon happened to walk out of the doors and we waved to him. He came over and asked us what we were doing there. We explained the possible treatment and he said do not go down that road. We said there really aren’t any opIons and what did he suggest. He suggested an Oncologist who thinks outside the box. We took the name of the Oncologist, picked up the disks of the scans, and made our way out of the hospital. This is a huge hospital, and the odds of bumping into my surgeon at the exact instant we were there was incredible. In fact, only a few months later they had constructed a wall in that exact area that would have blocked us from seeing my surgeon from our same vantage point. Another part of my miracle in the making.

Through a lot of tenacity and out of an abundance of grace, we were able to meet with the outside the box Oncologist and discuss my situaIon. His name is Dr. Klimo. He is an incredible doctor and has been such an important part of my journey.

Although there were no known treatments we would look for anything that may help. And having someone on our team that goes beyond the Standard of Care treatments was key. This incredible oncologist had come out of reIrement to help his paIents and he had agreed to take me on as a paIent. Another part of my miracle in the making.

We menIoned a couple of the potenIal therapies we had researched to date to the outside-the-box oncologist and he looked into each of them and gave us feedback and the results of his research. One opIon was Dr. Duma and the Gamma Knife which targeted the white pathways to potenIally hinder or stop the growth of GBM. Another one was a novel, but brand new technique being used in prostate cancer treatment called AcInium-225. UlImately, we had to decide about the Gamma Knife opIon as if we proceeded with that procedure I would not be able to follow the Standard of Care radiaIon treatment. We elected to follow the Standard of Care RadiaIon treatment. The AcInium-225 potenIal was not available and it

was not for GBM although it does look like a possible treatment for some cancers in the future. We were not going to leave any stone unturned.

My research had indicated that we should find out if I was MGMT Methylated or not. This is a leading indicator of GBM survival. We asked for a copy of the Pathology Report and picked it up. It said that I was MGMT Methylated. Please watch the episode on MGMT MethylaIon for more informaIon about this.

All my research on the Keto for Cancer diet had cleared up some of the quesIons I had about the diet and how to get it into pracIce. I had a video call with Miriam Kalamian to go over what I was doing and the quesIons I had for her. She was extremely helpful and we made some adjustments and set up my Cronometer App properly together. I suggest you watch my Keto for Cancer Episodes and download Cronometer. For ease, I have this on my website under Recommended Products. If you would like the free Cronometer App that is great and it works well.

During the month of November 2018 when I was recovering from the surgery, watch my Episode on Debulking to learn more about the surgery process and recovery. I conInued to do research every day and spend Ime with my family.
One a[ernoon I sat down to take a rare break. It was November 26, 2018. I sat down in my chair, turned on the TV and the last channel that had been watched came on and it was in the middle of the a[ernoon news. The news story came up on the screen and the announcer said a new cancer drug had just been approved by the FDA. It was called Vitrakvi or LarotrecInib. They talked about it very briefly and then the screen started scrolling with the various Cancer’s that the drug could potenIally be effecIve on. To my amazement, Glioblastoma MulIforme was listed. I hit record on the PVR, rewound the program, and watched it again. There had never been a drug that could potenIally treat GBM and here it was listed in front of me. If I had sat down a few seconds later I never would have heard about it. If the TV had been on a different channel I never would have seen it. This goes beyond random luck and I consider this to be divine intervenIon, a true blessing, and Part of my miracle in the making.

I dove into this potenIal immediately and found that there was only a 1% chance that I would test posiIve to potenIally go on this drug. It requires that you are either NTRK 1, 2, or 3 also known as NTRK A, B, or C. They geneIcally test your

tumorandifitisNTRK1,2,or3thenyoumaybeabletotakethedrug. Itoldmy family and presented the drug to my Oncologists. None of them had heard of the drug. One of them informed me about FoundaIon One for tesIng but it would be expensive.

My outside-the-box Oncologist Dr. Klimo said he would look into it right away. He iniIated some local geneIc tesIng that was unfortunately inconclusive so he arranged for a second geneIc test to get underway.

At various Oncology appointments, I would undergo some Karnofsky Performance Scale tests. These tests help doctors to determine on a scale how well you are doing physically and mentally and as another possible way to determine if the cancer is returning.

Episode 0 – Ted’s Story Part 3

Episode 0 – Ted’s Story Part 3

Watch my Episode on the Karnofsky Tests for more informaIon. I have done well on these tests.

On December 02, 2018, my brother Jamie had organized a prayer vigil with family and friends. I found this to be excellent in my care and treatment. On one level it was a really important day to see so many people I love and those that love me and have many of them say a few words and some prayers over me. It was a chance to have everyone together and celebraIng life as we did not know how long I had le[ or what was to come. Some people from far away could not aQend in person; but, they parIcipated by sending video messages, audio messages, and wriQen messages. There were smiles, laughs, hugs, and tears. On another level as a ChrisIan, it felt unbelievable to have so many people praying for me and my family.

People from all over and those in aQendance all gave special prayers and offered love and support. Many of these people were delivering meals to our home for weeks during my diagnosis, surgery, and treatment. The love, care, and prayers li[ed us all up and provided spiritual healing and hope regardless of how my treatment went. It was helpful to my kids, my parents, my brother and his family, my friends, and my family. I cannot stress how important it has been to me to have this prayer vigil and the conInued prayers landing on my family and me. As I have said to everyone, we do not know what God’s plan is for us and we may not understand why things are happening; but, we can be at peace to know that it is a good plan. Thank you Jamie for making this happen and to everyone that contributed to making such an impact on my family and me during such a difficult Ime.

My radiaIon and chemotherapy treatments were to begin on December 04, 2018 (you can watch the Episodes on RadiaIon and Chemotherapy). I had gone in for my chemotherapy informaIon session about a week prior on what to expect and was amazed by the discussion. I believe in the future the teaching at such meeIngs will be quite different. They discussed how you need to stay hydrated and that they suggested sodas, ice cream, juices, and your other favourite drinks. They had a table out with many of these drinks as well as some snacks including cookies, donuts, and other sweets. I was a bit shocked because of all I had learned a[er reading the Keto for Cancer book and how important it was to avoid sugar at all costs. We can see that we must be our own best advocates and learn all we can about our opIons and possibiliIes as the Keto for Cancer diet is definitely not part of the standard of care as of yet; but, I feel it is so incredibly important. At this point and sIll today, I viewed these foods and drinks as a literal poison that would feed the cancer.

About a week before my radiaIon treatment was to begin I received a call from my radiaIon oncologist. He said that in order to treat the tumor area with the most benefit he was planning to increase the field of the radiaIon. He wanted to discuss this with me as it would mean there would be some consequences. He said that

we would increase the 3-dimensional boundary of radiaIon around the tumor cavity by an addiIonal 2.5 cenImeters in all direcIons. Although this would increase the chance that we would radiate any of the tumor cells that had escaped the surgery it would mean that there was a chance I could lose my eyesight in my right eye and a 100% chance I would lose the hearing in my right ear. This was yet more bad news and it choked me up. I found it difficult to speak. I answered that we would proceed with this new plan. It was more aggressive; but, it would give a beQer chance at eliminaIng as much of this aggressive cancer as possible and this was the Ime to act. As a single parent, I had to do all I could to fight this disease. I was out at the Ime with my Dad and we discussed it a[er the call and a[er weighing it out we agreed it was the best decision. My radiaIon oncologist called back and asked if we could come to his office for an appointment as he realized that this was a difficult decision. We went to his office and he usually does not do this but he brought us into the computer planning room for the radiaIon treatment and showed how the different beams would enter, hit the tumor cavity, newly selected addiIonal area, and exit my head. I would undergo the maximum of 60 Gy in 30 fracIons of radiaIon on the VMAT or Volumetric Modulated Arc Therapy machine.

I had also looked into another adjunct therapy which is a therapy that is used alongside the standard of care treatments. It is called Hyperthermia. I underwent the full cycle of this treatment and you can hear all about it in my Episode on Hyperthermia which I suggest you watch.

On New Year’s Eve, I was siWng at the table having dinner with my family and friends when suddenly my hearing became muffled. I could see everyone talking and could make out some of what was being said but it was dull. I covered one ear and then the other and could tell I could not hear in my right ear. Although I knew this was going to happen it was sIll a shock and it was strange that this would be my new normal. It was upseWng. I went through the evening and night doing my best to adjust to the hearing loss. That night I prayed even more intently that I would be healed and that my hearing would be restored. I woke up in the morning

and my hearing was miraculously back. I was so grateful and to this day I conInue to have my hearing which is confounding to the doctors. Another step in my miracle in the making.

I reacted very badly to the Chemotherapy. I experienced extreme nausea and had to take some anI-nausea medicaIon daily to keep the nausea at bay. During the month of December, my weekly bloodwork to test for the impacts of the chemotherapy and radiaIon conInued. Each week the bloodwork came back worse. The chemotherapy and radiaIon were destroying my red and white blood cells and also my platelets. Other areas of my bloodwork were also greatly affected. By early January my platelets had reached a criIcal level of 19 and I was taken off the chemotherapy by the hospital pharmacy. This was terrible news – it was one of only two treatment opIons and I was closing in on the end of the most effecIve Ime period for the chemotherapy and nearing the end of the radiaIon therapy. What I didn’t realize was how serious my blood work was. I went home and then was called by the hospital that I needed an immediate blood platelet transfusion as my platelets were at a criIcal level. The normal range is between 150 to 400 and mine were only 19. At a reading of 10, you can start to spontaneously bleed and since there is a +/- 10% in blood platelet test results it was imperaIve I get to the hospital as soon as possible. This was very distressing and involved many long sessions at the hospital while they tested my blood, secured the blood platelets and then I would have them administered via IV. Next, my bloodwork would be retested and it would be determined if my platelets were high enough to go home again or if I needed another transfusion. In all, I underwent five platelet transfusions over the next six weeks and today, more than two years later my bloodwork remains low and I am immune-compromised. My platelets have returned to about the 140 range but, my bloodwork may never return to normal levels. I did not know that this could happen and being immune- compromised and having low blood platelets causes me to modify my life, acIviIes and be extra vigilant about viruses, and other possible pathogens. This has been further heightened during the Covid-19 global pandemic.

I had also been told that due to the amount of RadiaIon in my brain while I was undergoing the radiaIon treatment I would need to go back on Dexamethasone which is a steroid. I had taken Dexamethasone the day I was told I had a brain tumor to reduce the swelling to bring comfort iniIally and reduce the swelling enough for the surgery. Now apparently, I would need to go back on dexamethasone to reduce swelling and pressure due to the RadiaIon Therapy. However, the doctor who administers the Hyperthermia treatments had suggested an alternaIve and a[er viewing the documentaIon with my family and my medical team I began to take Boswellia. I took it throughout my enIre RadiaIon Therapy and never had to go on the dexamethasone which was very rare. Watch the episode on Dexamethasone and Boswellia for more informaIon. I also have a study from the NaIonal InsItute of Health (NIH) on Boswellia on my website under the secIon called Resources and the sub-heading Research.

By January 20, 2019, I had completed my radiaIon therapy and we had to wait for the swelling to reduce over a period of months before we could do the next MRI to determine if the cancer had returned yet. I will explain that waiIng is a challenge. Because GBM grows so quickly, is so deadly, and is not easily detectable unIl later stages you tend to live your life between scans. It is a strange phenomenon and I have found that the building of worry and quesIons such as “What if it is back?” tend to creep into your psyche. I call it scanziety and I believe it is only human to feel some. I would recommend that you talk to others about this when you feel it and remember to try and stay posiIve as I believe this makes a difference in how well your body responds to treatments and how it fights disease.

By this point, I had been on the Calorie Restricted Keto for Cancer Diet for almost three months

Episode 0 – Ted’s Story Part 4

Episode 0 – Ted’s Story Part 4

…and my total weight loss was 40 pounds. This was made up of my initial weight loss of 20 pounds due to my nausea and inability to eat for the weeks before my diagnosis, plus an additional 20 pounds resulIng from the special Calorie Restricted Keto for Cancer Diet with intermittent fasIng. A[er two and three-quarters years I remain at the total weight loss of 40 pounds. The weight loss feels good and since it has stabilized with my diet and exercise it seems to me to be healthier overall and I believe helps with many aspects of my overall health and my body’s ability to fight the cancer. I will menIon that I do tend to feel cold more o[en due to having less body fat and I had to purchase some new pants.

During this Ime, we were waiting for more informaIon about the locally conducted tests on my tumor for the NTRK fusion markers. As this second group of results was also inconclusive we decided to get the tesIng done by FoundaIon One based in Cambridge, MassachuseQs. It was expensive and there was only a 1% chance that I would test posiIve for the NTRK fusion marker; however, 1% was beQer than 0%. Especially when we learned about LarotrecInib / Vitrakvi, how it worked, as well as its efficacy. Please watch the Episode on FoundaIon One and LarotrecInib / Vitrakvi for addiIonal informaIon.

We met with my outside-the-box oncologist Dr. Klimo and he agreed and was very supporIve to proceed with trying to get approval for me to take the drug. Although the iniIal tesIng was inconclusive we sIll wanted to proceed to the next step. Dr. Klimo works with his incredible pharmacist Dr. Shideh Shadfar and together we applied for the drug through Health Canada. This is no small undertaking. This is a new drug that has not been approved in Canada, has never entered the country, and only recently was approved by the FDA. The skill and knowledge required to submit an applicaIon to Health Canada of this nature cannot be understated. Dr. Shadfar is very skilled and knowledgeable and has been such a blessing in my treatment. As a result of the thorough and well-done applicaIon on my behalf to Health Canada, they granted me as an individual, special approval to use the drug under the Special Access Program. This is incredible and another step in my miracle in the making. Thank you, Dr. Klimo and

Dr. Shadfar for all of your conInued determinaIon, dedicaIon, and perseverance – what a team!

The next step was for the manufacturer to allow me to have access to the drug. The manufacturer is Bayer and they required a conclusive report from FoundaIon One staIng that I was either NTRK 1, 2, or 3 posiIve. We had sent the geneIc sample to FoundaIon One about a week before hearing this news and within two weeks we received the report from FoundaIon One and the key finding was that I had the NTRK 1 fusion marker and Vitrakvi / LarotrecInib was a possibility for me! This was another step in my Miracle in the Making.

With this news, we met with my outside-the-box Oncologist Dr. Klimo and his pharmacist Dr. Shadfar. Dr. Shadfar sent the report to both Health Canada and Bayer and we were absolutely thrilled that Bayer approved me for the drug. I have been told that I am the first person in Canada to be approved and to take LarotrecInib in Canada! Another step in the miracle in the making. The drug had to be shipped from the United Kingdom to Germany and then to Canada. It had some delays and was a long-awaited process. We were at my Pharmacist’s office, Dr. Shadfar’s when the drug arrived by special air delivery about a week later. It was April 18, 2019. We went over the instrucIons for taking the drug with the incredible Dr. Shadfar and I was to begin taking the drug the next day which happened to be April 19, 2019, which was Good Friday of all days. Incredible.

I have been taking LarotrecInib since and I am so incredibly blessed to be on this drug. I am so grateful to my oncologists, especially Dr. Klimo, my pharmacist Dr. Shadfar, Health Canada, and to Bayer to have made this very special drug available to me. This amazing new drug works on all solid forms of cancer (That is: Not any blood cancers such as leukemia) as long as the paIents’ tumor tests posiIve for either NTRK 1, 2, or 3. Since learning of this new drug my outside-the-box oncologist Dr. Klimo has already successfully tested another paIent with a completely different cancer who tested posiIve and that paIent is also taking the

drug now. This is amazing and such a blessing. It may be only a 1% chance, but someone has to be that 1 out of 100. It is a rare possibility, but worth reviewing in my opinion. Thank you Bayer PharmaceuIcals for approving me for this incredible new targeted therapy medicaIon.

On another note, I had the pleasure to meet the Doctor who did the iniIal research into LarotrecInib / Vitrakvi only one month ago. His name is Dr. Sorensen. I was able to thank him and I am so appreciaIve. He began his work on developing this drug many years ago and it is nothing short of a miracle that so many years before I would need this medicaIon he was working hard to make it into a reality. We appeared together in a Webinar in June 2021 and you can view the Webinar on my YouTube Channel and website. Thank you, Dr. Sorensen.

I conInue to do the Keto for Cancer Diet as I believe that it is absolutely criIcal in my cancer treatment. The odds are extremely against being in the 1% group that will have the NTRK gene fusion and where LarotrecInib / Vitrakvi may be an opIon. But, virtually all of us can adapt our diet and follow the Keto for Cancer Diet. I believe this is why this is such an incredible opportunity and may be one of the greatest overall cancer breakthroughs for Glioblastoma and all cancer paIents. I cannot stress enough the importance I feel towards reviewing this informaIon and making your own decision about the Keto for Cancer calorie-restricted diet.

With a lot of anxiety and trepidaIon, I underwent my first MRI since compleIng my standard of care treatment coupled with my Keto for Cancer Diet, and the other adjunct treatments in mid-June 2019. We waited anxiously for the results and when they came in they were very upseWng. It read that it appeared there was a 9 mm nodular and rim enhancing focus and was suspicious for a locally recurrent enhancing tumor. Plus, there was another area that was more conspicuous than the previous postoperaIve MRI. It appeared that the cancer was returning and was already visible. This was very emoIonal as we knew what this likely meant as it was about eight months since the diagnosis and I had now undergone all of my

standard of care treatments. We decided to check with another expert and had another MRI done a month later. This Ime a doctor specializing in GBM reviewed the MRI images and to our great relief, the results were that he did not believe the cancer was returning. He noted the anomalies that were highlighted in the June MRI and said they were less prominent in the July scan; but, they seemed instead to be healing and brain adjustment areas that resulted from the debulking surgery and the radiaIon and chemotherapy; but, we would conInue to monitor these scanned areas and the results carefully in future scans. This was great news and shows it is important not to let the results of one test get you too high or too low. Remaining as posiIve as you can is important in the fight against this disease as well as being your own best advocate.

I have undergone scans every 3 months since and so far the cancer does not seem to be visible which is wonderful. With the Covid-19 global pandemic, my family and I have to be incredibly careful as I remain immune-compromised. I find one tends to live three months at a Ime between scans. I conInue to follow the Keto for Cancer Diet very carefully every day and I do not deviate at all. I am so fortunate to be taking the LarotrecInib Vitrakvi drug. I exercise daily and get blood tests every month.

I have conInued to learn and over the past year and a half I have worked a bit at a Imetomakethesevideos. IneedtobecarefulasIcanonlydoabitataImeasI get faIgued if I do too much in a day. The surgery, chemotherapy, and radiaIon all have a permanent effect on my stamina and memory. Since the radiaIon treatment I do someImes search for words now and other symptoms that do not allow me to be as strong or have the same abiliIes as I once had. I do all of this with my goal to help others who have been afflicted with GBM. I firmly believe that we need to learn all we can and that each of us must take all the steps we can in our baQle with Glioblastoma.

Once you have the knowledge, you can be your own best advocate and take the steps towards your treatment with your family, friends, and medical team. It has taken a lot of Ime to do all of the research, find experts, possible paths, and special treatment opIons – Ime we just don’t have with such an aggressive disease. I thought puWng it all in one place so you can watch and re-watch as o[en as you need would be useful and possibly provide you the tools you may need to help in your baQle.

I know how difficult it was to get any posiIve informaIon about GBM in my searching and I’m happy to try and extend this informaIon to anyone who is facing the same baQle. If you find this informaIon helpful please remember to subscribe to this channel, watch each video to the end, click on the like buQon for each video and ask your friends and family to do the same as fortunately there is not a large group of people with Glioblastoma and this is the best way to get this informaIon out there to anyone else who may be searching. I invite you to follow me on my journey – Lets Go!

If you feel compelled to help please go to my website as seen on screen and go to my Patreon secIon if you are able to provide a gi[ to help with the costs of making these videos it would be appreciated. Please know that this is informaIon I have researched and learned and it is helping me. It may or may not help you. Please review all informaIon with your family, friends, and medical team before proceeding with any of these possibiliIes. God bless you and we will see you in the next Episode.

Episode 1 – Glioblastoma Guide

Episode 1 – Glioblastoma Guide

Glioblastoma Guide Episode #1

Hello, and welcome to our first video. What is this YouTube Chanel all about? It is about sharing knowledge, offering some hope where possible, breaking down complex issues as best I can, and letting you know about my path so we may journey together. I feel that being prepared and knowledgeable may give you a better chance to succeed. I believe some of us can improve our chances and take action to potentially make a difference and I thought this YouTube channel dedicated to GBM patients may be helpful and comforting.

I plan to provide videos to share what I have learned, done, my comments, and steps that I have taken to fight GBM. All, some, or none of this information may help you; but again, no promises – GBM is voracious and there’s no getting around that. Each video will describe a topic and I urge you to review the videos several times and discuss your thoughts with your medical team, family, and friends and make your own decision about what you will do to combat your GBM. Several of these videos will discuss adjunct possibilities which are treatment options to be done alongside standard of care treatment. Other videos will provide knowledge so you can better understand what is happening and potentially make better- informed decisions. I know how shocking this diagnosis is and how difficult it is to accept this is happening; but, time is critical and we must get over the fear, anxiety, disbelief, and feeling of paralysis just as soon as possible so we can begin to take steps that may help us.

I am excited to share this information with you. There is much to learn, and I have broken it down into many videos so you can watch and re-watch as you desire. For clarity, I have tried to keep each video about one point. Some sections will build upon each other while other sections will be a completely new subject. I think this is the best way to help you absorb this information and allow you time to think about each topic.

I found the first few videos I am making to be especially important to me and I hope they provide some good information and possibilities for you. Although the outlook seems bleak, I have followed a path that has led me to this point. I am still here, alive after two years after my diagnosis on October 24, 2018, and it is my plan to make these videos that may help some of you. Knowing you are not alone and hearing what I have done may provide a ray of hope and lift your spirits. Not all of us are going to make it to or beyond that 14.6 months of median survival; but, we are in this boat together, a community, and perhaps these videos can help or provide some encouragement and comfort to you and your loved ones.

It has taken many months of reading, researching, work, and application to arrive at this moment. Instead of taking months to find, review, and put into practice all of this information on your own, it is here in one place. Watch the videos on my channel and I hope that these videos work for you like having a guide on an unfamiliar journey instead of a map. A map may be confusing, it may lead to a certain location or fate.

Whereas a guide may lead you through troubles unforeseen on the map. I invite you to join me as we walk this journey together. To watch more and to help make these videos possible please subscribe to my channel, click on the like button in each video, ask your family and friends to do the same as this is fortunately not a large community of people with GBM and this is the best way for others to find these videos. Additionally, any products that I suggest or recommend are linked below in each video or on my web site to which I may receive some proceeds to help with the costs of these videos. Also, if you feel compelled or if you can help please log onto my Patreon page as seen on- screen which will assist me in making these videos.

Please leave any positive or encouraging comments below and remember this is information I have researched, and it is helping me; it may or may not provide benefit to you. Please consult your medical team before following any steps I have taken on my journey. I hope these videos are helpful and can make a difference in your life. You can go to my website listed on screen to access the links for each video in this series in order. God bless you.