I was diagnosed with low grade NMIBC in December 2023, underwent TURBT in January 2024, had Mitomycin instilled in the bladder, then six BCG treatments. No further cancer was found until January 2025, when high grade NMIBC carcinoma in situ was found at a different location on the bladder wall. The cancer was surgically removed from the bladder wall and I received an Adstiladrin treatment nine days ago.
I had pronounced fatigue, fever for the first three days, chills, loss of taste, mental "fog" and decreased appetite. My doctor said that these side effects would lessen with time, but the fatigue continues. I am scheduled to have another cystoscopy at 75 days post-treatment, to evaluate the results. My doctor tells me the treatment will be repeated every 90 days, with no stop date. He says there is insufficient information available to him for him to determine when, or if, the treatments should end.
I had recurrent low grade NMIBC for years. Had multiple resections which carried me for about 20 years, then had Mytomycin and BCG treatments only to later get high grade NMIBC. I suspect either the Mytomycin or BCG treatments elevated my cancer grade. My doctor now is suggesting Adstiladrin. Not sure if I want to take a chance on the cancer getting out of control but I don't have much faith in these treatments anymore. I've noticed for me that there is a link between inflammation and cancer recurrence. Cancer is a metabolic disease. We need to look at diet more closely for staving off future occurrences. After my next TURBT, I will go full keto with intermittent fasting. There are a lot of reputable studies now about this and it's looking as promising if not more than some of the these mediocre treatments. It is also important to mention that everyone has different food sensitivities that may be fueling their own cancer as no two humans are alike. I found out (through testing) that I am extremely sensitive to coffee. I've been drinking it for years. This very well may be my cancer cause. It may be different for you. Some food for thought...
I had recurrent low grade NMIBC for years. Had multiple resections which carried me for about 20 years, then had Mytomycin and BCG treatments only to later get high grade NMIBC. I suspect either the Mytomycin or BCG treatments elevated my cancer grade. My doctor now is suggesting Adstiladrin. Not sure if I want to take a chance on the cancer getting out of control but I don't have much faith in these treatments anymore. I've noticed for me that there is a link between inflammation and cancer recurrence. Cancer is a metabolic disease. We need to look at diet more closely for staving off future occurrences. After my next TURBT, I will go full keto with intermittent fasting. There are a lot of reputable studies now about this and it's looking as promising if not more than some of the these mediocre treatments. It is also important to mention that everyone has different food sensitivities that may be fueling their own cancer as no two humans are alike. I found out (through testing) that I am extremely sensitive to coffee. I've been drinking it for years. This very well may be my cancer cause. It may be different for you. Some food for thought...
Thank you for this. It ties in with some other reading I have been doing about a connection between nutrition and cancer. Is there a particular reason why you have chosen Keto instead of Mediterranean or some other nutrition plan?
I had recurrent low grade NMIBC for years. Had multiple resections which carried me for about 20 years, then had Mytomycin and BCG treatments only to later get high grade NMIBC. I suspect either the Mytomycin or BCG treatments elevated my cancer grade. My doctor now is suggesting Adstiladrin. Not sure if I want to take a chance on the cancer getting out of control but I don't have much faith in these treatments anymore. I've noticed for me that there is a link between inflammation and cancer recurrence. Cancer is a metabolic disease. We need to look at diet more closely for staving off future occurrences. After my next TURBT, I will go full keto with intermittent fasting. There are a lot of reputable studies now about this and it's looking as promising if not more than some of the these mediocre treatments. It is also important to mention that everyone has different food sensitivities that may be fueling their own cancer as no two humans are alike. I found out (through testing) that I am extremely sensitive to coffee. I've been drinking it for years. This very well may be my cancer cause. It may be different for you. Some food for thought...
Interesting perspective. I'm plant-based (vegan/vegetarian), diagnosed with high-grade NMIBC in 2023. BCG refractive after six treatments, now preparing for fourth Adstiladrin treatment. (Cystoscopies are clear so far, praise God). I suffer from chronic inflammation, perhaps due to stress and/or 2 - 3 cups of coffee daily. I suspect a potential bladder cancer link to mRNA COVID-19 vaccine, but no evidence to support this. Anyone care to opine on my conspiracy theory?
Glad your cystoscopies are clear. There could very well be a potential bladder cancer link to the mRNA Covid vaccine. I don't know if we will ever know for sure the extent of the vaccine damage. Luckily, I did not get the vaccine. As for being Vegan: It is the diet of choice for longevity and cancer prevention, however, once cancer is present in your body, the ketogenic diet is recommended. There has been so much research done lately on the effects of ketones on the body. Most experts agree cancer needs sugar to thrive. Ketones replace carbs for energy and starve the cancer. It’s a better form of energy for us as well. Since all carbs breakdown into sugar, high carb diets like the vegan diet can be problematic. Thomas Seyfried, a biologist at Boston College who has studied cancer for over 30 years publishes a lot of articles on cancer and its relationship to food. I trust his studies as he is not selling anything, just sharing data and insights. In 2019, my cancer turned high grade. After undergoing a TURBT, I adopted a very strict keto diet. A year later, I was cancer free, but still, my oncologist suggested I start Keytruda. At the time, there was only about one year of data on it , so I respectfully declined and told him I will continue my keto diet as it seems to be working for me. I could almost see his eyes roll. I stayed on the keto diet for over 4 years with no recurrence. I thought I was out of the woods. Gradually, I relaxed on the diet, started drinking coffee, eating lots of desserts, breads, everything I loved. And now, the cancer is back. NMIBC in situ. So, after TURBT, I will go back on keto. Don’t love it but I’m a believer. And here’s the twist: I just went back to see my oncologist. Turns out he was diagnosed with gastric cancer is now on the ketogenic diet!
Thank you for this. It ties in with some other reading I have been doing about a connection between nutrition and cancer. Is there a particular reason why you have chosen Keto instead of Mediterranean or some other nutrition plan?
Ketogenic diet restricts carbs whereas the Mediterranean diet does not. It is all about carb restriction. Cancer is fueled by carbs. Ketones replace carbs for energy, starves the cancer. Look up Thomas Seyfried, biologist at Boston College. He has published numerous papers on the ketogenic diet and cancer. You can find him on podcasts and YouTube as well. Some are lengthy but very informative.
I had recurrent low grade NMIBC for years. Had multiple resections which carried me for about 20 years, then had Mytomycin and BCG treatments only to later get high grade NMIBC. I suspect either the Mytomycin or BCG treatments elevated my cancer grade. My doctor now is suggesting Adstiladrin. Not sure if I want to take a chance on the cancer getting out of control but I don't have much faith in these treatments anymore. I've noticed for me that there is a link between inflammation and cancer recurrence. Cancer is a metabolic disease. We need to look at diet more closely for staving off future occurrences. After my next TURBT, I will go full keto with intermittent fasting. There are a lot of reputable studies now about this and it's looking as promising if not more than some of the these mediocre treatments. It is also important to mention that everyone has different food sensitivities that may be fueling their own cancer as no two humans are alike. I found out (through testing) that I am extremely sensitive to coffee. I've been drinking it for years. This very well may be my cancer cause. It may be different for you. Some food for thought...
I have aggressive NMIBC carcinoma in situ, had my first Adstiladrin treatment on March 20th and have a cystoscopy scheduled in June to determine whether I have a complete response. I've been talking with my son (30s and vegan for the past six years) and he has made the case for major dietary changes. I have had chronic inflammation for more than 20 years and it has, in particular, significantly curtailed my use of my hands. My rheumatologist has diagnosed psoriatic arthritis and is now recommending I begin treating with Apremilast (Otezla). I enjoy and/or do all the wrong things: sweets, carbs, an abundance of coffee, and nearly 40 years and counting of practicing family law. Thank you for the information concerning the Boston College biologist; I will do some reading (better still, have my brilliant son do the reading). I have little empirical knowledge of the tangential effects of the mRNA COVID-19 vaccine, though I have received several doses. I have insufficient technical knowledge to read the peer-reviewed studies of the vaccines and their apparent outcomes with a reasonable expectation of meaningful insight. When addressing complex questions, I am wary of my predisposition to adopt answers that are clear, simple and wrong, as H.L. Mencken advised.
Glad your cystoscopies are clear. There could very well be a potential bladder cancer link to the mRNA Covid vaccine. I don't know if we will ever know for sure the extent of the vaccine damage. Luckily, I did not get the vaccine. As for being Vegan: It is the diet of choice for longevity and cancer prevention, however, once cancer is present in your body, the ketogenic diet is recommended. There has been so much research done lately on the effects of ketones on the body. Most experts agree cancer needs sugar to thrive. Ketones replace carbs for energy and starve the cancer. It’s a better form of energy for us as well. Since all carbs breakdown into sugar, high carb diets like the vegan diet can be problematic. Thomas Seyfried, a biologist at Boston College who has studied cancer for over 30 years publishes a lot of articles on cancer and its relationship to food. I trust his studies as he is not selling anything, just sharing data and insights. In 2019, my cancer turned high grade. After undergoing a TURBT, I adopted a very strict keto diet. A year later, I was cancer free, but still, my oncologist suggested I start Keytruda. At the time, there was only about one year of data on it , so I respectfully declined and told him I will continue my keto diet as it seems to be working for me. I could almost see his eyes roll. I stayed on the keto diet for over 4 years with no recurrence. I thought I was out of the woods. Gradually, I relaxed on the diet, started drinking coffee, eating lots of desserts, breads, everything I loved. And now, the cancer is back. NMIBC in situ. So, after TURBT, I will go back on keto. Don’t love it but I’m a believer. And here’s the twist: I just went back to see my oncologist. Turns out he was diagnosed with gastric cancer is now on the ketogenic diet!
I just finished a new book by Partha Nandi MD: Heal your Gut, Save your Brain. While it doesn't dwell on cancer, it does discuss the importance of diet and our microbiome of intestinal organisms on controlling inflammation. It was very easy to read and understand the mechanisms behind our diet affecting the rest of our body, especially our brain. Well worth the time spent reading. I would recommend it to folks interested in improving their diet.
I just finished a new book by Partha Nandi MD: Heal your Gut, Save your Brain. While it doesn't dwell on cancer, it does discuss the importance of diet and our microbiome of intestinal organisms on controlling inflammation. It was very easy to read and understand the mechanisms behind our diet affecting the rest of our body, especially our brain. Well worth the time spent reading. I would recommend it to folks interested in improving their diet.
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I had recurrent low grade NMIBC for years. Had multiple resections which carried me for about 20 years, then had Mytomycin and BCG treatments only to later get high grade NMIBC. I suspect either the Mytomycin or BCG treatments elevated my cancer grade. My doctor now is suggesting Adstiladrin. Not sure if I want to take a chance on the cancer getting out of control but I don't have much faith in these treatments anymore. I've noticed for me that there is a link between inflammation and cancer recurrence. Cancer is a metabolic disease. We need to look at diet more closely for staving off future occurrences. After my next TURBT, I will go full keto with intermittent fasting. There are a lot of reputable studies now about this and it's looking as promising if not more than some of the these mediocre treatments. It is also important to mention that everyone has different food sensitivities that may be fueling their own cancer as no two humans are alike. I found out (through testing) that I am extremely sensitive to coffee. I've been drinking it for years. This very well may be my cancer cause. It may be different for you. Some food for thought...
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1 ReactionThank you for this. It ties in with some other reading I have been doing about a connection between nutrition and cancer. Is there a particular reason why you have chosen Keto instead of Mediterranean or some other nutrition plan?
Interesting perspective. I'm plant-based (vegan/vegetarian), diagnosed with high-grade NMIBC in 2023. BCG refractive after six treatments, now preparing for fourth Adstiladrin treatment. (Cystoscopies are clear so far, praise God). I suffer from chronic inflammation, perhaps due to stress and/or 2 - 3 cups of coffee daily. I suspect a potential bladder cancer link to mRNA COVID-19 vaccine, but no evidence to support this. Anyone care to opine on my conspiracy theory?
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Helpful -
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1 ReactionGlad your cystoscopies are clear. There could very well be a potential bladder cancer link to the mRNA Covid vaccine. I don't know if we will ever know for sure the extent of the vaccine damage. Luckily, I did not get the vaccine. As for being Vegan: It is the diet of choice for longevity and cancer prevention, however, once cancer is present in your body, the ketogenic diet is recommended. There has been so much research done lately on the effects of ketones on the body. Most experts agree cancer needs sugar to thrive. Ketones replace carbs for energy and starve the cancer. It’s a better form of energy for us as well. Since all carbs breakdown into sugar, high carb diets like the vegan diet can be problematic. Thomas Seyfried, a biologist at Boston College who has studied cancer for over 30 years publishes a lot of articles on cancer and its relationship to food. I trust his studies as he is not selling anything, just sharing data and insights. In 2019, my cancer turned high grade. After undergoing a TURBT, I adopted a very strict keto diet. A year later, I was cancer free, but still, my oncologist suggested I start Keytruda. At the time, there was only about one year of data on it , so I respectfully declined and told him I will continue my keto diet as it seems to be working for me. I could almost see his eyes roll. I stayed on the keto diet for over 4 years with no recurrence. I thought I was out of the woods. Gradually, I relaxed on the diet, started drinking coffee, eating lots of desserts, breads, everything I loved. And now, the cancer is back. NMIBC in situ. So, after TURBT, I will go back on keto. Don’t love it but I’m a believer. And here’s the twist: I just went back to see my oncologist. Turns out he was diagnosed with gastric cancer is now on the ketogenic diet!
Ketogenic diet restricts carbs whereas the Mediterranean diet does not. It is all about carb restriction. Cancer is fueled by carbs. Ketones replace carbs for energy, starves the cancer. Look up Thomas Seyfried, biologist at Boston College. He has published numerous papers on the ketogenic diet and cancer. You can find him on podcasts and YouTube as well. Some are lengthy but very informative.
I’ve done some research on that because I love sweets. Recently a lot have come out on food intake related to cancer. https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/sugars-role-in-cancer-1/
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1 ReactionI have aggressive NMIBC carcinoma in situ, had my first Adstiladrin treatment on March 20th and have a cystoscopy scheduled in June to determine whether I have a complete response. I've been talking with my son (30s and vegan for the past six years) and he has made the case for major dietary changes. I have had chronic inflammation for more than 20 years and it has, in particular, significantly curtailed my use of my hands. My rheumatologist has diagnosed psoriatic arthritis and is now recommending I begin treating with Apremilast (Otezla). I enjoy and/or do all the wrong things: sweets, carbs, an abundance of coffee, and nearly 40 years and counting of practicing family law. Thank you for the information concerning the Boston College biologist; I will do some reading (better still, have my brilliant son do the reading). I have little empirical knowledge of the tangential effects of the mRNA COVID-19 vaccine, though I have received several doses. I have insufficient technical knowledge to read the peer-reviewed studies of the vaccines and their apparent outcomes with a reasonable expectation of meaningful insight. When addressing complex questions, I am wary of my predisposition to adopt answers that are clear, simple and wrong, as H.L. Mencken advised.
I just finished a new book by Partha Nandi MD: Heal your Gut, Save your Brain. While it doesn't dwell on cancer, it does discuss the importance of diet and our microbiome of intestinal organisms on controlling inflammation. It was very easy to read and understand the mechanisms behind our diet affecting the rest of our body, especially our brain. Well worth the time spent reading. I would recommend it to folks interested in improving their diet.
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1 ReactionThank you for the recommendation. I will read Dr. Nandi's book. I just may not mention to my son that he may have been right.