This is my take on some drugs and supplements. I'm sure that there are others that I will add or delete as time goes on (I'm working my way through clinical trials, PubMed, examine, and some other sources).
I've been following some of this from shortly after diagnosis. And all of it for a couple of months.
If you would like the first 20 pages (these include the actionable pages - the rest is backup and I'm not as enthusiastic about writing it :), send me an IM with your e-mail. By the way, completely free with no strings, links, scams, blah blah blah. No motive other than trying to help others deal with this beast.
If this post violates the forum rules, I apologize, and please delete it.
Thank you for your efforts, consideration, and generosity. I always try to read your posts because they are researched and thoughtful. Writing a book is amazing. I look forward to seeing it. Thank you in advance.
And, I can't imagine how unselfishly sharing information with fellow PCa warriors could violate any forum rules... though there have been a few dust ups in the past 😳
This is GREAT! You capture many things we have been doing in your book and it is great to see another fellow warrior having success with NON-SOC. we’ve spent 4.5 years cleaning and supporting the system from a bottom up instead of top down approach as so far quality and quantity and been gained!
I think SOC has a large role in care but I completely agree that we have neglected exercise, diet, and anything non-SOC. My MO is a smart girl but her hands are tied and she once told me that if it isn't U.S. government FDA approved it can't exist in her world.One of my Mayo docs told me to eat whatever I wanted because it doesn't make any difference. Crazy! Just for cardiac health, that statement makes zero sense.
Thank you for your very clear and well organized presentation of your regimen. When appended with the relevant supporting research it will be a valuable resource for many. The google drive link worked fine. Paul
Good to hear. The longer book has a few sections with reference links. It takes a while to add them and isn't quite as interesting to me as researching new things (but I'll add them because I know how important they would be if I were reading someone else's material).
I have metastatic prostate cancer, Gleeson 8. 55 years old.
I have taken Eligard for 4 months and did my my first Docetaxel chemo 5 days ago. I have a bit of joint pain but am ok.
Im worried about long term physical degradation due to the 'treatments'. Without treatment my prognosis was 12 - 18 months life span. Im am just reading your medical history in your book. I have a goal to go on testosterone within 6 months (BAT) to restore my muscle mass etc. My oncologist's wish would be to have me on continuous ADT's until death.
Here's an image a couple days after chemo (looking a little grumpy!). I have gained about 1kg of fat and lost minor amounts of muscle mass and have less definition. I cant afford to lose condition as I may only have 4 - 5 years (statistically) life left and don't wish to spend it on the couch.
Thank you so much for your research and collation of the data. This type of data is not provided by by my oncologist.
I am in Australia. I had a PSMA PET scan after all the other typical scans (CT, MRI etc).
It uncovered an additional met in a lymph node closer to my spinal column. This was mixed news as additional mets are never welcome, but at least it was only one.
The Oncologist at this stage just acknowledged it but did not suggest any additional action at this stage and did not even acknowledge that this could cause pressure on the spinal cord. Obviously I find this concerning.
I only looked quickly, but quite an amazing collection of information. As an aside, I assisted a friend to privately publish a book some years ago and if you'd like to discuss, PM me. Ultimately it wasn't hard, it wasn't prohibitively expensive, and is something you should seriously consider as it would provide the ability to reach more patients who might benefit from the information. My opinion of course... Sharing it as you are now is a very selfless act and wonderful to say the least!
Thanks so much. Yes, I'll PM you. I could certainly use help getting started with the publishing and my goal is to provide info to as many people as possible.
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Just got on Xtandi plus Lupron
Worthy of public mention to brother Docam
Looking for a community to join.
Directions so others can follow you. FYI ;)
