Posted 11/13/2019 5:43 AM (GMT -7)
While 700 is extremely high we have had many members much higher. One, Todd1963, was diagnosed about 12 years ago at 3,216 and had extensive bone and lung Mets. He is still going strong thanks to many great treatments. Some others have not done well. It all depends on the individual and the specific grade of the cancer as measured by the Gleason score. At this stage it is not curable, but most often can be managed for some time. He will need a complete assessment including a Gleason score that will tell the docs how aggressive the cancer is and will help direct treatment methods.
Lupron is the starting point and I hope he had a two week course of Casodex preceding it. Some oncologists will introduce Taxotere, Zytiga and/or Xtandi in combinations in advanced cases like this. Another immunotherapy called Provenge is also often used. In other words, you must get aggressive with the treatments. I would also look into clinical trials that may provide access to treatments not yet readily available.
He needs to be with a great medical oncologist that specializes in prostate cancer and has worked successfully with cases like this. Where is he being treated and what do you know about the oncologist? If your doc says “we have never seen PSA this high” it is time to get to one that has. We can help with that if you need some direction.
Lupron stops the body’s production of testosterone. That will initially starve the cancer and should reduce the PSA and the tumor load. Side effects are similar to a women in menopause. Hot flashes, weight gain, loss of libido, fatigue and brain fog are all common. The degree will depend on him. The most effective counter is physical activity. Great for him that he is already strong and in the habit. It may be tougher for him but he should do all right. I was on Lupron for just over three years and it never got in my way, just an inconvenience, though for some it becomes a real problem.
It is great he has you. I did my own research and have always been open about the PCa. Some men choose not to be open. Some have another family member do the research and provide direction. I have found this forum to be most valuable and that is why a I am here after nine years since being treated. Many others have been here a long time and have seen a lot. This experience can be very beneficial for you and him. Please lean on us a lot. We are a friendly group and will do what we can to help.
And essential to the process it to not worry about the past. Obviously he was not in a PSA screening regimen as his cancer has been working and detectable for many years to get to this point. What matters is that you now know and are getting on the active, forward thinking treatment and lifestyle management that will bring the most positive results. The mental approach is just as important as the physical and it is vital that you and him are at your strongest. As one member always says “every day is a gift”. So use each day wisely.
Ps, AusTex tells me where you might be. Our sons spent a lot of time there. If I were in that area I would be at MDAnderson. They have a great reputation treating advanced stage PCa and many of the men on the forum have been treated there.