First, I would like to thank everyone who provided a response to my original post. All the information was very helpful.
Here is what I have done since that last post.
1. I contacted Dr. Morgentaler. Prior to his retirement a couple of years ago, he conducted a modified BAT treatment that I thought could help me. Dr. Morgentaler currently does over-the-phone consultations for a fee. You can schedule a consultation by calling 617-277-5000. He told me that the Modified BAT treatment would only slow down the cancer and in my current situation I’m looking for a Hail Mary pass to the end zone. Dr. Morgentaler recommended that if I were interested in the modified BAT treatment to contact Dr. Oliver Sartor at Tulane University in NOLA. Dr Morgentaler said he was considering opening up a practice in a couple of months’ time. He is in the Boston, MS area..
2. With all the information I received and taking into consideration my level of health, I decided my best bet was to contact Dr Onik in Fort Lauderdale (561-527-2380). I believe Great John was considering treatment under Dr. Onik. He wants me to get an Axumin PET scan to determine if he can help me. I’m in the process of scheduling the PET scan.
3. On Wednesday, 8/3, I entered Hospice since I’m not currently being treated for cancer and I need help with pain management. So far so good. That sounds funny, since I'm wheelchair bound, and having entered Hospice had a catheter installed, on Fentanyl patches (every72 hours) and morphine drops under my tongue as needed. My brain is functioning well, but not my body.
So it appears that it is "Hospice and an Aggressive Oncologist", haha!
I have no idea what the future holds regarding my health. I could end up dying before any treatment, so I will attempt to post a status every two weeks or so.
Good luck to all of you fighting this terrible disease.
No Regrets
Written by
skateguy
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I wish you the very best and pray for a good result for you. Also, it is really good of you to provide the information about BAT to the rest of us. Thank you.
Thanks for this update. The most re-assuring thing for me is what you said about your brain that it is functioning well. Men like Cleodman, Great John and others have said similar things that even on their final days on Earth, their thinking was still clear.
Thanks for sharing with us brother , please keep up updated. That hospice pain mgt in one place and treatment oriented activity someplace else is a novel move with potential. Good stuff.I’m hoping you get some positive benefits from that top drawer consulting.
Thank you for the update. Now that you have a plan things seem more hopeful then your last post. Others on here have used Dr. Onik and hopefully will chime in.
It's great that you can still consider travel while in hospice and wheelchair bound. You are an inspiration to us.
Thank you for posting skateguy. My brother was of sound mind and literally said goodbye to his daughter minutes before he left the bounds of earth, completely comfortable and pain-free.That being said, hold onto the Hope of treatment. I pray something works for you.
Hi Skateguy. Your courage in the face of aversity is an inspiration to me and my son We may follow your footsteps. Best wishes as you continue your journey. Papillon2.
I contacted Dr. Onik 4 months after my DX May 21. I found him compassionate but very realistic on the treatment he does. He reviewed my records and said that his success rate with people like me was about 30% without the downside of ADT. The caveat was I had to get examined PET ect. I decided to stay SOC but will go back to him if I become resistant.I pray that you qualify for his program and catch that “Hail Mary “🙏
I agree with addicted2cycling's comment in your last post. Dr. Onik is remarkable. He is compassionate with a gentle sense of humor. He is also a first class physician with an able, perceptive and responsive team. One night a couple of months after the initial treatment in December he called out of the blue to see how I was doing. When I returned to Florida in June for a lymph node biopsy and a prostate embolism, his assistants Zuri and Brian were there as well, though I don't think their presence was required for the procedures. My treatment is ongoing, the first did cut my PSA by 45%, where it has remained stable within a few points. The genetic analysis will inform what's next.
I wish you so much luck and good fortune, as others have said, I also admire your courage and spirit.
My husband has the AUS surgery in November 2020. He spent one night in the hospital. They do make an incision on the scrotum which caused discomfort but we bought a soft cushion for him to sit on. The surgery was effective for awhile but gradually he is becoming more and more incontinent. We visited the urologist who performed the surgery yesterday and he scheduled my husband for a cystoscope in a couple of weeks to check out the urethra. The urologist believes the urethra has either atrophied or possibly have erosion from radiation done in early 2020. If my husband can have the surgery again with the hope of success, he plans on doing it. Good luck to you
There are now 3 types of BAT, 28 days on and off, two months on high T and then Enza, finally high T until progression - then Enza, back and forth. Can you please ask what they now believe is the most effective?
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