First and foremost, MY journey and approach to living with Pca is mine and mine alone. I do not intend to suggest or try to persuade anyone on how they should approach their own battle and journey with Pca.
I will be 70 in August of this year; I was diagnosed with Pca in June of 2009, with a PSA of 6.4 as a Gleason 7 (3+4), I was just short of my 61st birthday. I found this forum in August of 2009 and have never left.
After a lot of research, I decided on surgery and went to Detroit in September 2009 and had surgery by Dr. Menon. Pathology results changed my GL to 4+3. I had no issues with incontinence following surgery and was back on the College ballfields umpiring in November 2009.
Following surgery, I began my relationship with my Oncologist at MD Anderson, Orlando FL. PSA tests following surgery indicated that Pca cells had already escaped the prostate. In December 2009 I began radiation to the prostate bed area, 70Gy in 35 treatments that ended in January 2010. PSA in December 2010 was 3.9 and rising.
I have been with my Onco since that time and am quite comfortable with his approach. We have a strong collaborative relationship. Everything we do (or not) is arrived at after much back and forth discussion. I bring him clinical trial info and other research and we discuss things through. To date I have been through 4 clinical trials at the NIH. All of them were diagnostic in scope because I strive to have all of the information I can when making decisions with my Onco. I do urge others to do the same.
After my radiation my Onco and I discussed my rising PSA. He told me he was charged with 3 things in my care; 1) to cure me of cancer 2) to allow me to have quality of life and 3) to keep me from dying. Our discussion about
the rising PSA was so much different than what I have seen here. His take was that I would begin ADT or something, when we had a target to shoot at and with which to measure the results of the treatment. We determined and agreed that he was not treating me based on a number, rather it would be based on proven progression of my disease. He stated that active treatment because of a number was like suspecting there were roaches in my house. To just go around blasting at the walls with a shotgun with no idea where they were would provide no hard evidence if my tactic was successful.
At this point I need to add that starting in November 2005 I had been the care giver for my wife when she was diagnosed with cancer. Seeing what she was going through gave me a very different perspective on my cancer. She passed away in June 2012. Compared to hers mine was and is a walk in the park. So waiting to start something did not frighten me. Death does not frighten me near as much as living with an absolutely “sucky” QoL.
In January of 2014 scans finally found involvement in 4 lymph nodes. These nodes were and still are measured in mm, although my PSA had risen to 92.50.
In February 2014, I began treatment with Lupron on a clinical trial coupled with TAK 700. After 6 months the numbers indicated the TAK was doing nothing for me and I was taken off the trial but continued Lupron for the remainder of the year.
In February 2015 my PSA had reached a low of 4.87 and we agreed that I would take time off from drugs with continued testing testing to monitor my PSA. I spent 2015 off drugs and a much improved QoL.
In February 2016 my PSA had risen to a very scary number of 143.05. However, my scans revealed that I continued to have no bone issues and there were no new nodes, just the same ones and still being measured in mm.
We agreed that I would begin another year of Lupron, but this time we added two, 4 treatment rounds of Taxotere. February 2017 my PSA was down from 143.05 to 26.35. With that response we decided that I would go off drugs with testing at 6 months.
2017 was also the year that I began my own designed Clinical Trial. Florida had voted to become a Medical Herb state. I had already been doing research about
the effects of marijuana on cancer. There have been trials going on at various places around the world on this, but nothing official in the US. The medical profession can’t because it is still a class 1 drug that was outlawed in 1937.
My 2017 six months scan were still the same, nothing in the bones and nodes that are still measured in mm with no growth and some shrinkage.
In fact, my February 2018 scans found that there were only 2 that are prevalent on the scans and they had to look really hard to find the others. They were not even reported on the findings of the scan.
My August 2017 testing had my PSA at 30.59 and February 2018 measured it at 46.56. This is the lowest my PSA has been since March 2015. My PSA had risen nothing like it had before and had not even doubled, much less exploded like it had in my previous times with no Lupton or other drugs.
I had a lengthy meeting with my Onco this last Monday. He was thrilled with my numbers and ready to agree that 2018 would be a no drug year for me with my usual 6 months testing. It was at this point that I told him that I had been conducting my own clinical trial for the entire year. When he asked what I had been doing I handed him a stack of research and trial papers that I had printed out on the effects of treating PCA with medical herb.
His response really surprised me. He showed a little anger, but it was not directed at me. Instead he said, that it was this kind of information that the medical profession has known about
for some time and desperately are wanting to conduct clinical trials in this country. But their hands are tied because of the FDA and Federal regulations.
In the end he told me to continue my “Clinical Trial” and he would see me in 6 months. He added that going forward we would only do the bone scan yearly while still doing the soft tissue scans every 6 months.
As stated in the first paragraph, this journey and approach to living with this crud is MINE and MINE ALONE. I am not sharing my story to suggest or persuade anyone how they approach their own battles and journey. I share this only to bring my long-time friends here at Healingwell up to date and to give a different perspective on how I am living life fully with this farkin’ disease.
My best to all of you,
Post Edited (Sonny3) : 3/7/2018 3:22:00 PM (GMT-7)