Editor’s Highlight …… living with advanced prostate cancer is a mental burden – hear how our guys address it!
Long-term Xtandi use may suppresses PSA response; using Opdivo/nivolumab; addressing advanced PCa blues; ice cap (kap) for chemo & other tips; spot RT for oligo disease; dizziness when exercising; PSMA scans; how does AR V7 test direct treatment; using ultra sensitive PSA post RP; RADICALS-RT results; should you add 2nd line anti-androgen to chemo?
For a copy of the Chat URL’s and information, please go to our PCa Forum (click top right). And feel free to post there yourselves on any PCa related topic.
Editor’s Highlight …… Are generic drugs like ‘flying in a Boeing 737 Max?’
Medicare’s positive Next Generation Sequencing revisions; successful oligimetastatic treatment; testostrone recovery after hormone therapy; furore around generic drug manufaturing; Lupron shortage; successful self-advocating; how long do you stay in adjuvant hormone therapy?; positive experiences with Dr. Antonarakis @ Johns Hopkins
For a copy of the Chat URL’s and information, please go to our PCa Forum (click top right). And feel free to post there yourselves on any PCa related topic.
This week our low/intermediate prostate cancer lead moderator – and AnCan Board Chair! – Peter Kafka reminds us that complementary medicine is exactly that …. complementary to conventional Western protocols. Relying on complementary and alternative can have tragic consequences.
We at AnCan fully support the use of complementary and natural medicine when combined with conventional treatments. We do not endorse alternative medicine (rd)
SEVEN CAN BE YOUR LUCKY / UNLUCKY NUMBER
The New Year began with a message on my phone informing me of the passing of a friend. Never good news, but for those of us in the Prostate Cancer community it is always a poignant reminder of just how deadly this disease can be. My thoughts always go to; “what more could I have done?”.
When I first met this man a couple of years ago, he had just been diagnosed as a Gleason 7 (4+3). He had always been a staunch believer in natural and alternative medicine. Now faced with a diagnosis of cancer he found his way through mutual friends to me. I encouraged him to get more information, a second opinion and a 3T-Mp-MRI and a follow up with a local radiation oncologist. He kind of followed these suggestions reluctantly and in his own way, but didn’t really heed the warnings and decided that he would seek alternative, non-medical treatments.
I kept in touch with this person over the past two years, checking in from time to time. I last saw him about two months ago and he was struggling because his disease had progressed substantially, yet he still adamantly refused medical intervention and wanted to treat it his own way. I am always really challenged in such a situation. I do my best to steer men to the best appropriate options for diagnosis and treatment, but I can’t make someone follow my direction. Men can be stubborn! I am sure I don’t need to tell you this.
Another good friend of mine who is also a Gleason 7 (4+3) took my advice and got a second opinion from Dr. Jonathan Epstein at John’s Hopkins. He also was trying to “cure” himself with an alternative regimen of hot baths, enemas and natural supplements. However, he called Dr. Epstein’s office to go over the pathology results and it happened that Dr. Epstein himself answered the telephone. My friend went over all his alternative treatment protocols on the phone. Dr. Epstein listened attentively and then said, “That’s all good, and that protocol won’t hurt. But you have to remember that your disease can kill you without medical intervention”. For this friend the message got through and he went after his prostate cancer with a radiation protocol. He is now doing just fine.
Many of you are fortunate to be diagnosed with a GL-7 ( 4+3 or 3+4) or even better a GL-6. But the fact that you are on this mailing list or checking out this website is indicative that you are wary and not taking anything for granted. Prostate cancer kills some 30,000 of us each year in the US and not all of these men are diagnosed as Gleason 8,9 or 10.
Never turn your back on this disease. Don’t be a stubborn man and convince yourself that “I know best”. I am not saying that medical intervention will cure your disease or does not come without costs, including quality of life. But early diagnosis, staying vigilant, making smart lifestyle changes and choices and seeking top quality medical expertise can all lead to a longer life in many circumstances.
So, when you roll the dice and the number comes up 7, pay attention!
Please note that any links referenced in this recording can be found in the Prostate Cancer Forum. Log in top right.
We also welcome our Advisory Board Member, Allen Edel (@TallAllen) tonight to contribute his moderation.
Topics:
No CT or bone scans prior to Gleason 9 surgery; peritoneal implants; accessing darolutamide; tragic consequences of complementary medicine alone; positive darolutamide experience; treating advanced PCa without hormone therapy; Tru-beam for spot radiation; oligometastasis radiation; pros and cons of debulking the primary tumor; treatment after enzalutamide fails.
