New to site and wanted to share my info which, as I read, is very comparable to all.
First diagnosed after lifting a table while helping my son move this last October 2017 and, thinking at that time thinking I throw my back out....not so lucky. After my initial visit to the critical care office, and x-ray, determined to have five herniated vertebrae.
After a revisit based on extreme back and hip pain to my primary care doctor he wanted to do another full blood work up, which he did earlier in May 2017. In May my PSA was at < 3, when I redid my blood work in Oct 2017 it elevated up > 87; then > 170 in November... every year I did visits and screened by my Urologist.
My elevated PSA in Oct 2017 lead to my first visit to my new Urologist who immediately order a complete bone scan and biopsy on Dec 6th. Bone scan determined significant multifocal metastatic disease involving the skull, spine, ribs, shoulder, pelvis and long bones, head to toe so to speak. CAT and PET scans verified above and added pelvic lymphadenopathy. Further, my prostate biopsy interruption revealed GI 4+5, 100% - out of 12 markers, one group 4, one group 3, and the other 10 markers in group 5. Urologist and I discussed and advised not surgery and referred to my Medical Oncologist.
I want to note that I am a man of faith, have the best wife anyone could have, Sarah, the best family and friends; this gives me so much strength and makes me strong!!!!
My medical oncologist recommended and we implemented this treatment - Zytiga (1000 mg once a day), Predisone (5 mg, twice a day), infused Zoledronic Acid drip, and a Leuprolide (7.5 mg once a month for now); with GREAT results with PSA and pain. PSA last month dropped to 3 and pain lever much, much improved with the exception of pain in the rib area on both sides (M7 - M11) vertebrae. Medical oncologist recommended consulting with my Radiation Oncologist who now has just implemented low dose radiation to the M7 - M11 back area. Did my second visit late yesterday and have a scheduled total of 10 treatments. Will let you know.
Started yesterday with a group with Memorial Sloan Kettering Cancer Center participating in Genomic Profiling both for myself and data research on prostate issues.
Staying strong and positive - ready for a battle if necessary.
God bless and stay strong all,
Brian
D/P/A - BAPMiami
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BAPMiami
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I believe you should explore the possibility of getting a Ga 68 PSMA PET/CT to determine location of metastasis and their extension and if the cancer if PSMA positive.
If it is I think you could qualify for Lutetium 177 therapy. I had these studies and therapy in 2016 with excellent results and not complications.
UCLA is doing a clinical study with GA 68 PSMA PET/CT (search for GA 68 PSMA and prostate cancer in clinical trials.gov). There are some centers doing clinical trials with Lutetium 177 PSMA treatment ( prostate cancer and lutetium 177 in clinicaltrials.gov).
If you were interested in the treatment and there were not clinical trials you could get the treatment in Europe. I went to Munich. The totoal cost is around $ 16 K.
This an article with information about LU 177, it has very interesting pictures about what happens when patients receive this treatment. This treatment has been going on in Europe, particularly Germany for many years and there is a lot of very complex science behind it.
Hello and thank you for your suggestion. To date I've had one PET, a PET F-18 FDG. Not sure how that differs but I will talk with my doctor next visit...
The PET F-18 FDG is much less sensitive than the GA 68 PSMA. The other difference is that it will determine if your cancer is PSMA positive and if it is then you could have the possibility of having LU 177 treatment and treat all metastasis at the same time wherever they are. Doctors in general do not agree or recommend treatments they can not perform. If you are interested in these therapies you should have to do some research.
Search google for prostate cancer and lutetium 177. There is a lot of science behind this treatment and it could be very effective and one of the advantages is that it treats your whole body and not a localized metastasis.
You are taking the right approach--aggressive treatment for aggressive cancer! You have to hit it hard as soon as aggressive cancer is diagnosed with the best prostate cancer Medical Oncologist that you can find.
Welcome to the group! I admire you attitude. A good attitude is like armor protecting you. If your insurance covers it, you may want to get an Axiom Pet scan. It is a lot more accurate and precise than a normal CT scan.
If the radiation does not work on the bone mets you may want to consider Radium 223. It migrates to the tumer and once there, low dose radiation kills it.
Please keep us posted on your status. You are part of our family now with more brothers and sisters than you can ever count. Remember, people like us we have to stick together!
Thank you Dr WHO -- not fammilar with Axiom Pet scan, had the PET F-18 FDG already. I will talk with my doctor next visit. My doctor has already advised that Radium 223 is on the plan if and when necessary. How did you react to the Radium 223 treatment?
Hello BAPMiami, I was diagnosed in 2011 with similar symptoms to yours. I chose to have 30 additional radiations (I had already had 42 radiations in 2007 for stage 1 PCa). I also chose to start Lupron injections every 3 months (I use Eligard which is generic) along with 3 weeks of Casodex to stop a testosterone spike. My PSA went down to 0.00 where it is today 7 years later. I have side effects from Eligard including no sexual functioning. My metastases have reduced over time, probably because the prostate cancer cells (and normal prostate cells) require androgens to reproduce. So there may be single cells in my body but they can not multiply. When the cells attach to the bones they attach, sink in, and leave a pock mark and are stuck their. Over time the bone may become less dense and I was given 4 shots total of Xgeva (osteoporosis drug) every 6 months to increase bone density. I was in church complaining about my future since the Oncologist only gave me 5 years to live and someone overheard my pity party and frankly announced, "Well my next door neighbor has the same disease and he is in his 7th year! He is doing just fine". So now I am in my 7th year and I get around pretty well. I have no new metastases, my hips hurt more, I use generic Tylenol 650 mg arthritis strength (from the drug store) 8 hour timed release. It is not habit forming and takes the pain to a livable level.
Good luck with your decisions, listen to the doctors. Ask all kinds of questions. Ask questions on Health Unlocked as well. Stay positive and keep on truckin'.
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New "aggressive cancer" diagnosis 
Salvage Surgery - Post Prostatectomy, Radiation and ADT
New info from new oncologist
New to Your Group
Unsure of best option in early prostate cancer diagnosis.
