This disease is wild. You would be dead if you had done ADT up to now with that number. I'm 30+ months on it with Nubeqa and I have Manières and the vertigo this week with the shot, a cold and a cold front has pushed me to the edge. PSA .04 Testosterone 3. I feel wonderful Keith. I'm looking to take a vacation soon.
Hey Scott. If I had stayed on ADT, I'd be castrate-resistant and likely dead from either the disease or giving up due to the side effects. Men with PTEN loss overall don't do that great on ADT. Some men, the lucky ones, tell me they feel fine on ADT + ARPI. Everybody is different. One day there will be an effective treatment for it without using androgen deprivation and blocking. Can't come soon enough.
I’m BRCA2 positive. I just had my prostate removed after 2 years of ADT and a clear PET. The surgeon said that my prostate had no cancer detected in it but recommended two more years of ADT. I had two lung nodules and four lymph nodes in my lungs too. PSA was 166 and a Gleason 8. Intermittent ADT is my goal with continued remission. I can’t stay on it forever and a PARP is not what I want ever. I wonder if the ADT before the surgery was more effective than having it done with the cancer still awake. My surgeon was excellent from Yale. Dr. Issac Kim, Chair of Urology. Fantastic man.
Wow! That is a crazy history. Just when you think you'd heard all the strange stories about this disease. PARP inhibitors can produce some dramatic responses for men with BRCA2. But if you want to avoid PARPi, check out bipolar androgen therapy. It's considered experimental but there is some data showing it can induce synthetic lethality like PARP inhibitors in men with BRCA2. https://pmc.ncbi.nlm.nih.gov/articles/PMC6763228/
I am a doc as well and added IVM and FENBEN + MEBEN to my regimen and reduced my PSA. I took it daily for 4 months (IVM was 2mg/kg) FENBEN 888/day, MEBEN 100/day
I hear so many anecdotal reports like this which I truly hope inspires a clinical trial. Sadly, the trial would probably have to be funded by a philanthropist to study those drugs in isolation. Meaning without ADT and ARPI, which ethically, would likely require studying them in men on Active Surveillance. The bioavailability issue for all of them an impediment. That's why I'm pulse dosing IVM while acknowledging the risk and all the unknowns. I'm probably going to do labs monthly at this point. Thanks for your comment.
Hi Keith, You've chosen a difficult and lonely path to where you are now, and I applaud your courage. It is hard to decide one's own treatment program, and then find health care providers who will support you. Most health care providers are pressured by their colleagues, their professional organizations, their employers, their insurers and the rest of the RCT network in the community and government to stay in the tent and support the status quo. I hope your body keeps supporting its own army in defense against a tough adversary. I wish you all good luck. I think of you often and support your decisions.
I am so glad you shared your positive news. Perhaps one day “they” will realize that it is not high testosterone that causes or fuels prostate Ca! It’s the other way around. Look forward to your Methylene Blue article. Why did you stop it? Best healthy wishes to you Keith.
Hi Oksana. As always, the causes of highly complex disease are multifactorial. Androgens do play a role but it's not a simplistic equation. That's why you see men with low testosterone develop aggressive prostate cancer and why bipolar androgen therapy is highly effective in some men. I stopped MB because it is a known inhibitor of the cytochrome P450 3A4 enzyme that metabolizes ivermectin. You take a very high risk when pulse dosing IVM and also taking drugs or supplements that block the metabolism of it. And there is a very long list of drugs and supplements that block CY3A4. And that's why men should not be experimenting with these drugs without being supervised by a doctor who knows these things.
Thank you for this info Keith. Would you say that MB is safe otherwise? My husband takes it along with other supplements. He is not on any other medications. As you say, this type of approach to treatment is very complex and you have to either educate yourself or find a specialist who is also willing to prescribe these drugs. In France integrative medicine doesn’t exist. So you either sink or swim. I am beginning to look for an integrative doctor in the US. I would highly appreciate if you can recommend someone who accepts international patients and provides consults via zoom. Thank you!
No problem. I don't think anyone could answer that question about MB's safety in any one individual. Everyone has unique genetic aberrations such as single nucleotide polymorphisms that may predispose them to problems with a drug or supplement. I don't know any doctors in the U.S. that "treat" or consult for patients in other countries due to legal issues. Best wishes to you and your husband!
I appreciate your courage and research in the face of what could have been terrible consequences. I say to everyone who is diagnosed "Everyone is different." You are a prime example. We can only make decisions for ourselves. Following someone else's path will almost always result in disappointment. Thank you for allowing us to journey with you. Much love.
This disease is wild. You would be dead if you had done ADT up to now with that number. I'm 30+ months on it with Nubeqa and I have Manières and the vertigo this week with the shot, a cold and a cold front has pushed me to the edge. PSA .04 Testosterone 3. I feel wonderful Keith. I'm looking to take a vacation soon.
Hey Scott. If I had stayed on ADT, I'd be castrate-resistant and likely dead from either the disease or giving up due to the side effects. Men with PTEN loss overall don't do that great on ADT. Some men, the lucky ones, tell me they feel fine on ADT + ARPI. Everybody is different. One day there will be an effective treatment for it without using androgen deprivation and blocking. Can't come soon enough.
I’m BRCA2 positive. I just had my prostate removed after 2 years of ADT and a clear PET. The surgeon said that my prostate had no cancer detected in it but recommended two more years of ADT. I had two lung nodules and four lymph nodes in my lungs too. PSA was 166 and a Gleason 8. Intermittent ADT is my goal with continued remission. I can’t stay on it forever and a PARP is not what I want ever. I wonder if the ADT before the surgery was more effective than having it done with the cancer still awake. My surgeon was excellent from Yale. Dr. Issac Kim, Chair of Urology. Fantastic man.
Wow! That is a crazy history. Just when you think you'd heard all the strange stories about this disease. PARP inhibitors can produce some dramatic responses for men with BRCA2. But if you want to avoid PARPi, check out bipolar androgen therapy. It's considered experimental but there is some data showing it can induce synthetic lethality like PARP inhibitors in men with BRCA2. https://pmc.ncbi.nlm.nih.gov/articles/PMC6763228/
Hang in there brother!
Doc Holden. can you share with me your contact info- would love to chat. dsb@sportsmeddoc.com. Thank you
I am a doc as well and added IVM and FENBEN + MEBEN to my regimen and reduced my PSA. I took it daily for 4 months (IVM was 2mg/kg) FENBEN 888/day, MEBEN 100/day
I hear so many anecdotal reports like this which I truly hope inspires a clinical trial. Sadly, the trial would probably have to be funded by a philanthropist to study those drugs in isolation. Meaning without ADT and ARPI, which ethically, would likely require studying them in men on Active Surveillance. The bioavailability issue for all of them an impediment. That's why I'm pulse dosing IVM while acknowledging the risk and all the unknowns. I'm probably going to do labs monthly at this point. Thanks for your comment.
Hi Keith, You've chosen a difficult and lonely path to where you are now, and I applaud your courage. It is hard to decide one's own treatment program, and then find health care providers who will support you. Most health care providers are pressured by their colleagues, their professional organizations, their employers, their insurers and the rest of the RCT network in the community and government to stay in the tent and support the status quo. I hope your body keeps supporting its own army in defense against a tough adversary. I wish you all good luck. I think of you often and support your decisions.
Thanks so much Jeff. I appreciate your support.
I am so glad you shared your positive news. Perhaps one day “they” will realize that it is not high testosterone that causes or fuels prostate Ca! It’s the other way around. Look forward to your Methylene Blue article. Why did you stop it? Best healthy wishes to you Keith.
Hi Oksana. As always, the causes of highly complex disease are multifactorial. Androgens do play a role but it's not a simplistic equation. That's why you see men with low testosterone develop aggressive prostate cancer and why bipolar androgen therapy is highly effective in some men. I stopped MB because it is a known inhibitor of the cytochrome P450 3A4 enzyme that metabolizes ivermectin. You take a very high risk when pulse dosing IVM and also taking drugs or supplements that block the metabolism of it. And there is a very long list of drugs and supplements that block CY3A4. And that's why men should not be experimenting with these drugs without being supervised by a doctor who knows these things.
Thank you for this info Keith. Would you say that MB is safe otherwise? My husband takes it along with other supplements. He is not on any other medications. As you say, this type of approach to treatment is very complex and you have to either educate yourself or find a specialist who is also willing to prescribe these drugs. In France integrative medicine doesn’t exist. So you either sink or swim. I am beginning to look for an integrative doctor in the US. I would highly appreciate if you can recommend someone who accepts international patients and provides consults via zoom. Thank you!
No problem. I don't think anyone could answer that question about MB's safety in any one individual. Everyone has unique genetic aberrations such as single nucleotide polymorphisms that may predispose them to problems with a drug or supplement. I don't know any doctors in the U.S. that "treat" or consult for patients in other countries due to legal issues. Best wishes to you and your husband!
Glad to see you found an oncologist that respects and supports your goals and decisions!
Thank you Dr. Flora!
I appreciate your courage and research in the face of what could have been terrible consequences. I say to everyone who is diagnosed "Everyone is different." You are a prime example. We can only make decisions for ourselves. Following someone else's path will almost always result in disappointment. Thank you for allowing us to journey with you. Much love.
Thanks so much Steve. You are spot on!