…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.