by raveon | Feb 11, 2021 | Uncategorized
Today we will discuss some of the basics of the Keto For Cancer Calorie Restricted Diet. Please make sure you order Miriam’s book if you have not done so already. I have it linked below in the description and on my website as can be seen onscreen.
It should be noted that this diet is not part of the Standard of Care that doctors follow. They may even be against the diet; however, there is a lot of information that convinced me to follow this path and I will do my best to inform you of what I have found so you can make your own determination.
There are some keys to success. First, you will likely not feel too great when your body does the transition from sugar to ketones; but, this is temporary and is known as the KETO Flu. Like many treatments, this is an adjunct option. This means it does not replace your standard of care treatments such as radiation and chemotherapy; but, it is an add-on that I believe has some real benefits. If we think about the whole aspect of diet it makes sense to me that diet links so much to our health. If we are trying to get well from an illness we often take prescription medication. These are typically tiny in size and volume compared to the size and volume of our meals; but, they can make a big difference. On the other hand, what we put into our body in the form of food and drink feeds all of our cells and how they operate.
It makes sense that all of these raw materials would have a significant effect on our bodies and how they operate. In the Keto For Cancer Diet, it works on three levels. First, it is a Keto diet, second, a calorie-restricted diet, and third it incorporates a fasting period overnight and between meals. All of these components together may work towards our goal of targeting the cancer, weakening it, and potentially giving the other standard of care treatments their best chance for success.
Glioblastoma grows very quickly and as we can see by the life expectancy, the standard of care therapies are likely not going to buy too much time. The Keto For Cancer Diet may have zero effect on you or it may help. I believe it has helped me and that is why I feel it is very important to share this with you so you can make an educated decision, talk to your medical team and family so you can decide if you would like to begin the process as soon as possible.
The essence of the diet is that you eliminate any add-on sugars, severely reduce carbohydrates which are another form of sugar for the body while also reducing protein but increasing fats. As I am not a nutritionist I would suggest that you work with a nutritionist to set up the diet and ensure it is being done correctly. The person you work with should be on-board with the Keto For Cancer Diet if it has any chance of potentially being effective for you. Another option is to contact Miriam Kalamian directly and book an online appointment.
Personally, I began a keto diet first, then read Miriam’s book, and then booked an appointment so I could make changes that were tailored for me. The portions you will eat are smaller than your traditional meals have been. At first, you will wonder how you can eat such a small amount and not be hungry. But, for me, the switch was not difficult. I feel full and I believe this will be fairly universal because of the nature of the high-fat diet. Once your body stops craving sugar and burns ketones you feel fine. This is due to the nature of switching from burning sugar and carbs which are used quickly and then leave you craving more sugar quickly vs. ketones which are derived from fat which provides a slow burn of the energy over a longer period of time without hunger.
I have developed many recipes and once this series of episodes are completed for Glioblastoma Guide I plan to make videos for my recipes to assist you in making them for yourself. I think the meals are delicious. The fasting period for my Keto For Cancer Diet is from 8:00 pm to 10:00 am. For most of this period you are typically sleeping and even in the morning I only start to feel hungry right around 10:00 am. This time is important as fasting is part of the process that may prevent the cancer from growing or from growing more aggressively. The calorie restriction part of the diet dovetails with the fasting; but, it also prevents the pancreas from sending out insulin in large amounts.
As we discussed in the previous video, I have learned that cancer cells sense insulin many times more than regular cells (my understanding is that there are 10 to 20 times more receptors for insulin on cancer cells than on regular cells). If the cancer cells detect insulin they know they are in a good environment with lots of energy to grow and that is what they do. If they do not see the insulin they know they are not in a good environment for growth and hopefully this slows down the growth. As can be seen in this illustration, insulin works like a key in a lock to open the door to the cell wall to let in more glucose which will feed the cancer. Most of our body cells run well on ketones whereas cancer cells cannot run on ketones. They rely on sugar which is in a typical diet and is very prevalent in the bloodstream. The whole idea here is to make it as difficult as possible for the cancer to grow.
My understanding of the diet is as follows. The information that doctors are taught and learn about cancer is that it is a genetic disease. The medical community says that the disease starts in the nucleus in the DNA which has mutations and this is what causes cancer. In fact, the National Institute of Health in the United States lists on their website that Cancer is a Genetic Disease. This is the foundation of the thought process and makes alternative viewpoints fighting an uphill battle. From what I have learned the genetic issues are likely to be a downstream result of the real cause of the cancer.
The research I have looked at and am following shows that the underlying cause of cancer is defective mitochondria. Mitochondria are the energy producers in cells and are also in charge of terminating the cell in the event of a problem known as cell apoptosis. Mitochondria take energy
in the form of glucose or ketones and combine them with oxygen which creates adenosine Triphosphate (ATP) which is called cell respiration and this ATP is energy for the cell. Because it is using oxygen it is called aerobic respiration. This is what the cell uses to do its job. In the case of a cancer cell, something has occurred to damage the mitochondria. You can see on images of healthy mitochondria that they have structures inside called cristae. They weave back and forth across the mitochondria in a thin strand almost like a thin wrinkled edge of paper. In a cancer cell, the cristae are either absent or look ghosted. As a result, the cancer cell’s mitochondria do not work properly and they switch to making energy the only way they can using anaerobic (meaning without oxygen) fermenting of glucose or glutamine similar to fermenting of yeast.
To demonstrate the underlying issue that cancer has damaged mitochondria, experiments have been conducted where a healthy nucleus of a cell replaces the nucleus of a cancer cell. Now, if the cause of the cancer was a genetic issue in the nucleus you would think the cell that had the cancerous nucleus removed and replaced with a healthy cell nucleus would no longer be cancerous. However, the cell remains a cancer cell. Conversely, if the cytoplasm including the mitochondria are removed from a cancer cell and then are replaced with the cytoplasm of a
healthy cell and we leave the nucleus alone we find that the cell becomes non-cancerous. If cancer was caused by an error in the nucleus this should not occur.
If cancer is due to damaged mitochondria then this is what we would expect to happen. The situation is made worse when we learn that the mechanism for a cell to die which is called cell apoptosis is controlled by the mitochondria. This is another reason why cancer cells do not
terminate themselves as they should. The damaged mitochondria do not give the message to have the cell die even though it is alfunctioning and is cancerous. This potential weakness in cancer cells may give us the ability to reduce, limit or eliminate their growth. I found this information to be shocking as I have found it to be supported by science; furthermore, it has not been adopted more universally in cancer treatment – especially in GBM where the options are so few, standard of care treatment does not typically yield long term survival and the recurrence of cancer is almost a certainty.
Just as an aside, a study on the National Institute of Health called Status of nutrition education in medical schools by Kelly M Adams, Karen C Lindell, Martin Kohlmeier, and Steven H Zeisel states “during 2004, we surveyed all 126 US medical schools accredited at that time. The results were that a total of 106 surveys were returned for a response rate of 84%. Ninety-nine of the 106 schools responding required some form of nutrition education; however, only 32 schools (30%) required a separate nutrition course. On average, students received 23.9 contact hours of nutrition instruction during medical school (range: 2–70 h). Only 40 schools required the minimum 25 h recommended by the National Academy of Sciences. Most instructors (88%) expressed the need for additional nutrition instruction at their institutions.” I found this to be almost unbelievable that out of the years of dedicated study and training that most Medical Schools programs only teach 23.9 hours of training in nutrition on average.
Every day we consume food and the type of food, nutrition, its role in the body, its role in creating and fighting disease is given so little time is amazing. It is better understood after this knowledge why there is not a better understanding in the medical field of nutrition or its possible
effects on disease and specifically cancer when we see how little of a doctor’s medical training is focused on nutrition. This is not the fault of physicians, if they are not trained on this material it is impossible for them to implement these strategies or even have knowledge of them in many cases. But, if we have the opportunity to implement this strategy to combat GBM we open a potential door to an option that is just not available in Standard of Care treatment.
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. Additionally, any products that I suggest or recommend are linked below to which I may receive some proceeds at no additional cost to you 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. You can pledge an amount that will assist me in making these videos. Please leave any positive or encouraging comments below and remember this is information I have learned, and it is helping me; it may or may not provide benefit to you.
God bless you I hope you find these videos are helpful and can make a difference in your life. Please consult your medical team before following any steps I have taken on my journey. I will see you in the next episode.
by raveon | Feb 11, 2021 | Uncategorized
Hello again. We return today to discuss MGMT Methylation.
MGMT Methylation is a little tricky; but stick through to the end of the video and I hope you are better informed and able to talk with your medical team and family with improved understanding and what is the importance of MGMT methylation on your pathology report.
What is MGMT Methylation? This is one of the first and early tests you should receive on your tumor. I think it should be automatic, but it may not be the default that this test is completed or that you are informed of the result. I requested this test to be completed and to receive the results. MGMT is Methyl guanine Methyltransferase. That is a real mouthful I know. Methylation, in a nutshell, is whether a gene is turned on or off. We will discuss this in more detail later.
After surgery and recovery, your first treatments with Glioblastoma will likely include Chemotherapy. The most likely version of this is Temozolomide. It is one of the most significant breakthroughs in GBM treatment in the past 10 – 15 years and may provide additional weeks of life expectancy. There are not a lot of drugs that can make it through the blood-brain barrier. Your brain is protected by the blood-brain barrier so that harmful substances, such as viruses, bacteria, or other nasties find it difficult to get into the brain. This works to our advantage most of the time.
But when we are trying to deliver drugs to the brain to attack the brain cancer the blood-brain barrier prevents most options from working efficiently. Some Temozolomide can make it through the blood-brain barrier and as a result, it can work as a chemotherapy drug. It is designed to work best to take it while undergoing Radiation Therapy. The two treatments may work together in synergy to a greater effect than either one on their own. As I said earlier, Temozolomide may provide additional weeks of life. But, for others, it may provide more or, less time. It may keep the cancer at bay if it is effective. We will discuss this further in the Temozolomide video which you can find on my channel.
The topic of MGMT can be confusing so feel free to watch this video multiple times to come to a clear understanding. It is helpful to understand that we all have MGMT genes in our bodies. It is either methylated or unmethylated. Unmethylated means the gene is active and the MGMT works as it should in the body. Methylated means that the MGMT does not work as it should in the body. If we have GBM we want our MGMT to be Methylated i.e. NOT working.
Back to MGMT Methylation. Due to large variations in different studies, we know that about 30% to 60% of GBM patients will be MGMT Methylated. If you are one of these people it can be an advantage. DNA is made of 4 letters GTA and C and the target of Temozolomide is the G. In the DNA of the GBM cancer cells, Temozolomide attaches to the G (guanine). The Temozolomide molecule attaches to the ‘G’ and prevents the DNA strand from synthesizing or (reproducing). Additionally, Radiation Therapy also damages the DNA of cancer. If you have unmethylated MGMT both the damaged DNA from the Temozolomide and the damage that was caused by the Radiation Therapy will likely be repaired by the body by using the MGMT enzyme. The MGMT enzyme will strip the marker off the G (guanine) and stop or reduce the effectiveness of the Temozolomide. This is why unmethylated MGMT in Glioblastoma equates to a poorer prognosis.
MGMT is a protein or enzyme that repairs DNA. If unmethylated MGMT sees the Temozolomide molecule attached to the ‘G’ (Guanine) it will strip it off rendering the Temozolomide mostly ineffective. Imagine that the ‘G’ has a hat on it and that hat causes the DNA not to be able to reproduce and instead causes it to die known as cell apoptosis.
The unmethylated MGMT goes around and finds any ‘G’s’ with hats on them and it removes the hat. If we are taking a drug to help kill the Cancer by attaching to the Guanine and preventing the DNA strand from reproducing we do not want this to be prevented by our body’s own system.
What does Methylation mean? A gene has two ends to it, a promoter end and a functional end of the gene. If the promoter end is methylated it is turned off. As a result, the functional end of the gene does not work. If a Glioblastoma tumor is methylated it means that the MGMT protein is NOT being produced and therefore the molecule will NOT be removed from the ‘G’ (Guanine). Essentially, the Temozolomide that successfully makes it to the cancer cells are NOT stripped off and can do their job.
This is why it is important to know if you are MGMT Methylated positive or negative. You want to be MGMT methylated Positive.
MGMT-positive patients in the Glioblastoma population had significantly longer overall survival which is usually abbreviated as OS when compared to MGMT Methylated – Methylated patients example Overall Survival 32.8 months versus 12.4 months for Unmethylated patients.
If you are not MGMT Methylated positive do not lose hope or be too disappointed. Although the prognosis is improved for approximately 30% to 60% of GBM patients with MGMT Methylation it is not the only factor that may help. There are other steps you may be able to take. Each of these steps is time-sensitive and they have been important to me.
Remember, Glioblastoma is incredibly challenging; but, with some knowledge and understanding, we may increase our odds of fighting this terrible disease.
I encourage you to watch the other videos in this series and become knowledgeable so you can make informed decisions with your medical team, family, and friends.
It should also be noted that if you are MGMT unmethylated, Temozolomide may still have a beneficial effect and for some people, this could be important. There is no way to know unless you try. The information above gives you both a better understanding of how it works and the probabilities of being MGMT Methylated positive or negative but there is no definitive answer here. People will react differently and this is why I always encourage you to learn all you can and then make informed decisions with your medical team, family, and friends.
There is a lot of technical information in this video so watch it as many times as you need to get a good understanding and then discuss it with your medical team, family, and friends.
To help make these videos possible please subscribe to my channel, watch each video to the end, 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. Additionally, any products that I suggest or recommend are linked below to which I may receive some proceeds at no additional cost to you 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. You can provide a gift that will assist me in making these videos. Please leave any positive or encouraging comments below and remember this is information I have learned, and it is helping me; it may or may not provide benefit to you. God bless you, I hope you find these videos are helpful and can make a difference in your life. Please consult your medical team before following any steps I have taken on my journey. I will see you in the next video.
by Jeremy | Sep 8, 2022 | Uncategorized
Hello again. Episode 8 will discuss Genetic Testing which can lead to Precision Medicine.
Genetic Testing is relatively new; however, it is potentially a game-changer in your Glioblastoma treatment. The first human genome ever mapped was completed in 2003 and took 13 years to complete and cost up to an estimated 3 billion US dollars. This testing is available today and takes approximately two weeks to complete and costs several thousand dollars. An incredible advancement that has opened the door to the field of Precision Medicine. Where drugs do not target a single type of cancer but instead target specific Oncogenetic drivers across potentially many cancer types. The future of precision medicine is here today. What will likely be considered standard practice in the not-too-distant future is available today. In the January 15, 2022, published European Journal of Human Genetics study the Canadian genetic professionals surveyed believed that by 2030 genetic testing would be broadly implemented. If the experts see the direction towards genetic testing increasing in the near future, we should probably take note and when possible implement tomorrows medicine today to our benefit. In many cases future advances are something we need to await; however, in this case the testing is already available and we can take advantage of what this may offer. We may find no useful information today; but, who knows what possibilities are just around the corner that could be available if we have the genetic testing completed.
What is Genetic testing?
How do I prepare for this testing? Where do I go for this testing? Is Genetic Testing Expensive? What could be found? Why should I do genetic testing of my tumor? We will review each of these questions and more in order to assist you and your medical team in preparing to discuss and review Genetic Testing.
What is Genetic Testing?
Genetic Testing is where the Pathology Department at your hospital or medical facility prepares representative samples of your tumor and ships them to a Laboratory where they conduct genetic testing on your tumor to determine the genetic profile of the tumor, possible Oncogenetic drivers of the tumor and any precision medicine that may be available to treat your cancer. It is important to know that Genes tell cells what to do, including when to make new cells. Additionally, it may also provide possible clinical trials available for patients with your tumor profile and Oncogenetic drivers. Specific qualifications for each trial will be done through a screening process with the clinical trial. There will be a Principle Investigator who will likely be involved with you. They and their team will evaluate each patient and determine if there is a good fit with their Clinical Trial. Additionally, the testing also reveals biomarkers. A
cancer biomarker is a substance or process that is suggestive of cancer in the body. A biomarker may be a molecule secreted by a tumor or a specific response of the body to the presence of cancer. It could be a protein, a gene, or other molecules. Changes in biomarkers over time can show changes in your cancer that may help you and your medical team. We see that genetic testing includes a genetic profile of the tumor and information about the biomarkers of your cancer. All of this information can be useful to you and your medical team in pursuit of possibilities, viable options, or potentially precision medicine.
How do I prepare for Genetic Testing?
To prepare for Genetic Testing you will need to discuss this with your medical team. Specifically, you will want to discuss this with your oncologist, and neurosurgeon, and ensure your pathologist is contacted. You will let each of them know that you will be having your tumor genetically tested. Typically, this means that the tumor will be taken from the operating room to the pathology department where it will be prepared. This process involves the pathologists determining the best sample to send and then preparing the tumor according to the specifications required by the Laboratory conducting the Genetic Testing. This may involve preparing the sample in paraffin wax, or freezing the sample for future testing availability.
It is important to let your medical team know which laboratory or company you have chosen to do the Genetic Testing. Your Oncologist will typically need to prepare an application. You will need to pay the lab or company you have selected for the testing. And your oncologist will provide the Pathology department with the sample specifications (ensure this is done and who is responsible to identify and retain the samples).
Even if you decide not to test at the moment; you should review this with your medical team so that the sample is prepared for future use. Perhaps, a genetic test of this tumor will be useful in the future.
Where do I go for genetic testing?
There are several choices to have genetic testing completed. I have used two different laboratories including Foundation Medicine and MSK Impact. I preferred the Foundation Medicine report because I found it to be superior for information display as well as written in a way that the layman can either understand directly or with some supporting research. It is expensive to get this kind of testing done; however, it is far less expensive than other medical procedures. And in some jurisdictions, your health insurance may cover part or all of the cost of the testing. And in some areas, the government, Cancer agencies, hospitals, laboratories, or pharmaceutical companies may sponsor certain testing. Also, ask the companies if they offer any discounts. For example, if you inform them that you do not have medical insurance coverage.
Let the company you choose know that Ted from Glioblastoma Guide sent you. I tried to have a discount for the genetic testing provided for my viewers, but Foundation Medicine and MSK-Impact were unable to provide one at the time of recording. Perhaps with time they be able to offer something.
How many genes do they test for and why is that important?
At the time of filming this episode Foundation Medicine test named Foundation One CDx tests for 324 specific genes. And as more understanding develops in genetics and the role of different genetic errors increases the number of genes tested will likely increase for targeted analysis. The genes tested include the three main types of base substitutions, deletions, and insertions. But, can also include fusions. Over time current research has targeted the focused genes that impact cancer and are Oncogenetic drivers. As more is learned in the research and scientific communities, this information is analyzed to create a hypothesis, leading to testing, followed by clinical trials, and ultimately to targeted therapies and precision medicine. Having the largest amount of genes tested that aligns with current cancer knowledge provides more potential possibilities for a Precision Medicine to be available for your cancer.
What is the role of Precision Medicine in rare cancers?
Rare cancers have an obvious negative downside. Because so few people have these Cancers there is little research conducted to unravel the mystery of the disease. In the United States, there are approximately 10,500 people diagnosed with Glioblastoma Multiforme each year (3 in 100,000 people). By comparison, 284,000 people a year in the USA are diagnosed with Breast Cancer. 248,000 people are diagnosed with prostate cancer each year in the USA. Approximately 237,000 people are diagnosed with lung cancer each year in the USA and 186,000 people are diagnosed with leukemia, lymphoma, or myeloma. As we can see GBM is only a fraction of the cases of cancer each year. GBM accounts for less than 4% of the cases of breast cancer and if we take a total of breast, prostate, lung, and blood-borne cancers GBM is less than one percent of the total. As a result, little research funds are allocated to this terrible disease. It is so deadly, so aggressive and the Standard of Care offers very little hope. Because of this truth, we must be equally aggressive in our battle against GBM. In this case, we have the tool of Precision Medicine. If we get our GBM cancer tested genetically and receive the report it may let us know that there is no information to help; however, it could offer a targeted therapy such as a new medication. It could offer a clinical trial for the specific GBM cancer you
MSK-IMPACT analyzes 505 genes. These genes were nominated by researchers and experts from across MSK. The genes were chosen because they play a
critical role in the development and behavior of tumors. All actionable targets (genes that provide important information about the disease and possibly can be targeted with drugs) are included. MSK-IMPACT will be updated regularly as new targets are discovered. have. If you are fortunate you may discover as I did that you have the specific Oncogenetic driver for a new or existing medication that could target your GBM cancer. We do not have many tools available, and your medical team cannot keep track of every breakthrough, medication, or clinical trial available. Precision Medicine may offer this possibility. If you do have a precision medicine target you would want to know as soon as possible and to begin the process of starting treatment with this precision medicine. As I have said before, be your own best advocate and take advantage of any realistic possibilities with efficacy.
The reports I have received from Foundation Medicine have been detailed and were approximately 30 pages in length. The possibility that the NTRK Fusion marker would be found in my tumor was 1%. But that is so much better than 0%. And in my case, the marker was there, and I became the first person in Canada to be approved for the drug Larotrectinib / Vitrakvi. I will explain more about this incredible precision medicine in a future episode. Please watch for it. Who knows what or when will be the next breakthrough? There is other leading- edge research that is currently being done on many aspects of cancer treatment and specifically with Glioblastoma. Please watch my future episode on Glioblastoma Future Treatments. So, as much as rare cancers reduce the possibility of treatments being developed, they do have a possible Achilles Heel. If we can complete genetic testing and find results that offer precision medicine treatments we can target our specific cancer – not all cells in general such as chemotherapy where both healthy cells and cancer cells are targeted. It is similar to using a hose with a mist sprayer or using a solid stream. We direct the water to exactly where we want it to go in the garden without spraying everything to water the one plant we wish to water.
What happens in the process?
You speak to your Oncologist and medical team. A requisition request is made. Your medical team prepares the forms necessary. You request that they arrange for your tumor to be prepared by the Pathology Department for genetic testing. As an example, Foundation Medicine has specifications for the Pathology Department. The samples are prepared and then packaged and sent to Foundation Medicine. You make the payment to Foundation Medicine.
Foundation Medicine receives the sample. Once received they begin the intake and testing process. At the time of filming this takes approximately two weeks; but, as technology and testing change over time this period of time may increase or decrease. You can ask Foundation Medicine. The process takes longer at MSK-IMPACT, approximately 4-6 weeks, and can involve also sending finger or toenails as MSK-IMPACT cross test against your healthy DNA to determine what genetic differences are present in your normal cells and which are present in your cancer cells and if there are any crossovers.
Make sure to request that members of your medical team receive the report and also ensure to include yourself. Finally, you and your medical team review the report. As I have said earlier there may be no actionable information or treatments available at this time, but the
Oncogenetic drivers in your tumor will have been noted and if there are future breakthroughs in these areas you can keep up your research to note any possibilities. Or you may find there is an existing precision medical treatment or a clinical trial. You can discuss this information with your medical team, family, and friends and make your decisions going forward. Additionally, if you have a recurrence, and you have genetic testing completed again you and your medical team can compare the reports and determine if anything has changed and what may be occurring in the tumor environment.
Receiving the report
Review the report with your Oncologist, medical team and also review the report yourself. Keep the report for future reference and review as mentioned earlier. The reports I have received are 30 pages in length. There is a lot of information. Remember to review the report with your medical team. Preferably, you should review the report, write down any questions you have, and conduct some preliminary research to better understand any of the terms and allow you to ask more refined questions so you have the best information to work on with your medical team.
What are the Oncogenetic drivers of your tumor?
Oncogenetic drivers mean – Onco (Cancer) genetic (DNA driven) meaning that the cause of the cancer is a cancer-causing genetic issue such as a fusion, deletion, or overexpression. Oncogenetic drivers are the genetic cause of some cancers. These can be NTRK 1, 2, or 3 gene fusions, EGFR over expressions, and others. All of these genetic issues can cause the cell to reproduce uncontrollably. The purpose of precision medicine is to attempt to find the on or off switch for these specific genetic errors. It is much more complex than finding an on or off switch. In many cancers, there can be multiple Oncogenetic drivers, or there can be one dominant driver and a secondary or tertiary driver. Some drivers may have treatments available and some may not have treatments available. The important step is to perform the testing and discover if you have an actionable precision medical treatment or clinical trial that may be of benefit. If there is something you can do then you, your medical team, family, and friends can determine the best path forward. And remember, if there is no precision medical treatment available at this time do not lose hope. Time is our enemy with GBM. New treatments may become available and it is our job to see what reasonable possibilities with efficacy we can pursue to gain more time so that new treatment possibilities have a chance to develop. I continue to conduct a lot of research about GBM as well as looking into some of the specific oncogenetic drivers that have been identified on the genetic tests that have been completed on my GBM. As an example, you may have discovered that you have an NTRK 1 oncogenetic driver in your tumor and you get it treated with one targeted therapy medicine. In the future, this drug stops working, and you discover that another Oncogenetic driver that was identified in a previous genetic test is now the dominant Oncogenetic driver in your current tumor. This may provide your medical team with improved insight into possibilities for your treatment. Specific genetic information is valuable and may unlock doors today, or in the future for your treatment. If you are able to pursue genetic testing then I recommend it. For me, it has been a lifesaver. You can watch my episode in the future on Larotrectinib / Vitrakvi to learn more. We have a terrible adversary in GBM and having as many possibilities available to us to not only better understand our specific GBM; but, also, to potentially discover all possible viable treatments is key to our survival. I pray you will find beneficial outcomes with actionable treatments if you pursue genetic testing; but, if you do not, you can rest assured that you tried one of the best possible treatment paths in your pursuit to battle GBM. Who knows if the findings from your genetic testing could help you down the road as more treatments become available; or, perhaps some future study of the accumulated testing results could lead to a benefit for individuals diagnosed with this horrible disease in the future.
Search for possibilities in these areas.
Depending upon the specifics of your situation you will either be looking at an emergency situation where you take what is available as soon as possible or, you may have more time available to you and are taking a methodical approach to follow possible treatments. You may be in an emergency situation where your tumor is possibly inoperable and only a biopsy can be achieved, or where your GBM is not responding to standard-of-care treatment, or, you have a recurrence of GBM growing quickly. If this is the case then the incredibly quick approximately two-week timeline to receive the results will be greatly appreciated. You will know if there are any precision medicine treatments available, or, if there are any Clinical Trials that may be possibilities for you. If you have more time, you will be able to do more research and keep an eye out for any developments in any of the Oncogenetic drivers identified in your GBM. Perhaps this pays dividends immediately, or, there is always the possibility of tomorrow for a breakthrough. Keep your eyes peeled and work with your medical team, family, and friends to pursue possibilities.
If any Clinical Trials are available you can look into these at www.clinicaltrials.gov This is a great tool that allows you to read more about the trial, what they hope to achieve, what stage the Clinical Trial is at currently. For example, the following are a basic layman’s description of the various phases of drug development in Clinical Trials and are not medical descriptions or to be considered an exhaustive list or complete descriptions.
Please refer to the Clinical Trials regulators in your Country.
- Phase 0 where testing is NOT done on humans.
- Phase 1 – Directly after lab testing we have the initial small sample size testing done on humans to help determine if the drug works, dosing, and efficacy. For safety reasons, the sample size is very small at this phase.
- Phase 2 and 3, Larger scale testing on humans to further refine dose, efficacy, side effects, and durability of the drug.
- Phase 4 – Drug safety profile, further refining of information from earlier phases, and testing of any long-term side effects.
- Phase 5 – Drug Approval.
- Phases 1 – 4 are typically where it may be a possibility to participate in a Clinical Trial. Remember, there are risks involved and possibly direct and indirect costs as well in some trials. The Clinical Trial may be of benefit to you or it may not and there is always the possibility that the Clinical Trial may cause harm. If you have few or no options and have a terminal disease you may decide with your Medical Team, family, and friends that you wish to participate and have a chance at the benefit, or to know that your participation may help future patients with GBM or other cancers if you are involved in a basket Clinical Trial. Some Clinical Trials may test one drug or one therapy, while others may be a combination of drugs and or therapies to see if there is a synergistic benefit when combining these treatments.
Why should I do Genetic Testing of my Tumor?
Studies show that Glioblastomas are very heterogeneous in nature. They present with cellular and molecular diversity not only among tumors but also within the same tumor. Coexistence of cells with different properties has been proven by numerous genetic studies, which suggests that glioblastomas may arise from different cell types. Various genetic changes including mutations, chromosomal aberrations, and copy number variations in both oncogenes and tumor suppressor genes have been found. Such genetic diversity implies glioblastoma is not a single
condition, but most likely a set of diseases.
Standard of care consists of maximal surgical resection followed by radiation and temozolomide chemotherapy. However, even with such an aggressive treatment in 75% to 90% of the glioblastoma cases, the tumor recurs within 7 to 10 months after surgery. Only 9% of glioblastoma patients are still alive two years post-diagnosis and these are considered long-term survivors. Major issues in glioblastoma management are its intracranial location, fast growth, and infiltrative nature that leads to incomplete surgical resection and the development of therapy resistance. Furthermore, chemotherapy offers limited options due to poor drug penetration through the blood-brain barrier. Identifying the cell of origin of glioblastoma is of great importance for patient care. If treatment could be tailored to target a specific subset of cells in every patient, the effectiveness of clinical care would be greatly improved. Besides, targeting specific cell types would lead to the design of novel drugs with minimal toxicity to other non-malignant cells
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GBM is a terrible disease and we need to move to understand along and provide ourselves with the greatest possibilities of resisting this disease. Genetic testing provides us with the possibility of detecting a targeted therapy against our specific GBM; but, it also may provide the data needed to help others diagnosed in the future. In my case, genetic testing provided such a possibility and it may be for you as well.
There are always two sides to every argument. Some may ask, what are the downsides of genetic testing? This is true; but, some of the potential negatives are, anxiety while awaiting the results, inconclusive results, cost, and results that do not provide any actionable targets. All of this is assuming your treatment entails having debulking surgery where a sample of your tumor will be retrieved. So, in my opinion, the largest risk which is the surgery and having GBM in the first place has already occurred. We must realize that we may receive no benefit from the testing; however, this too is information. We can know that we tried genetic testing and unfortunately it did not reveal anything – but at least we tried. Also, anxiety while waiting is real; but, with or without the testing there is going to be uncertainty and anxiety with GBM so that argument is not as substantive. Cost is a real issue; however, your insurance may cover the costs, and compared with other medical procedures it remains reasonable, and over time Genetic Testing will become more and more affordable. I believe in the, not-too-distant future Genetic Testing will become part of the Standard of Care as it will reveal treatment options that help people in a more direct and targeted way than current methods of treatment can offer. Evaluating all of these cons brought me to the conclusion that genetic testing was right for me. Be your own best advocate and review your thoughts on the matter. Then, talk with your family, friends, and medical team to determine if it is right for you.
Remember, there are other steps you may be able to take. Each of these steps is time-sensitive and they have been important to me.
Glioblastoma is incredibly challenging; but, with some knowledge, understanding, and self- advocacy we may increase our odds of fighting this terrible disease.
I encourage you to watch the other episodes in this series and become knowledgeable so you can make informed decisions with your medical team, family, and friends.
To help make these videos possible please subscribe to my channel, watch each video to the end, click on the like button in each video, and ask your family and friends to do the same as this is fortunately not a large community of people with GBM. Additionally, any products that I suggest or recommend are linked below to which I may receive some proceeds at no additional cost to you to help with the costs of these videos. Please leave any positive or encouraging comments below and remember this is information I have learned, and it is helping me; it may or may not provide benefit to you. God bless you, I hope you find these videos helpful and can make a difference in your life. Please consult your medical team before following any steps I have taken on my journey. I will see you in the next episode.
