New to site -- PCa back after 25 years

[Bill2544]

Hi all,

I am new to this site and looking forward to both contributing and benefiting from your insights/experiences. I'm 79 years old and once again dealing with PCa, 25 years post RP in 1993 (PSA 12, GS 8, limited spread to bladder but negative surgical margins and no evident nodal or seminal vesicle involvement; received no adjunctive radiation or HT). PSA was below 0.1 for the first decade and rose very slowly from there until recently (0.29/3.21.17 to 0.38/6.20.18) => 3.2yrs DT. This has definitely caught my attention!

So my research interests are again focused on current PCa dx and tx options en route to a reasoned going forward strategy in consultation with my oncologist. I would greatly appreciate any and all inputs.

I have just one operational question right now about navigating the site: how do I search for topics (e.g., Metformin, PSMA, etc.)? For some reason, I've not been successful at searching by entering a topic in the upper right "Search Advanced Prostate Cancer" window. Nothing happens when I enter a topic and, when I hit the icon to the right, down drops a window of other choices. Searching previous posts is my best first step to catching up with all that you have contributed in the past, so I hope someone can hold my hand.

Thank you,

Bill

[Tall_Allen]

You can get an Axumin scan, although i may not show anything with your low and slow PSA. If you have access to one of the PSMA-based PET scans that might show something. If no distant spread, adjuvant radiation + HT can still work.

[Bill2544 in reply to Tall_Allen]

Thank you, Allen. I'm just now checking into a PSMA-Ga68 trial at Penn. Quite coincidentally, it is sponsored by 511 Pharma, a startup company which I've been serving as an advisor (commercial strategy) for the past several years. Its CEO, a Radiology research professor and former colleague (I'm a retired Penn professor) is in China right now but is helping me to make the appropriate connections.

As you suggest, I'll also check into Axumin and other PET scan options available at Penn, Fox Chase and others in the Philadelphia area.

I'm struck by your observation that if there's no spread, "radiation and HT can still work". Would both likely be required if no spread? I'd assumed that HT would be a likely choice if spread were detected but (perhaps naively) that radiation would follow if not.

[Tall_Allen in reply to Bill2544]

HT radio-sensitizes the cancer and it kills off any strays. A recent randomized trial proved the value of the combination for salvage radiation. Some ROs use a PSA threshold of 0.5 (Sandler), others use a PSA threshold of 0.1 (Zelefsky). I think you can judge for yourself, but note that with a GS 8 there is larger risk of micromets.

pcnrv.blogspot.com/2016/08/...

The salvage radiation dose is controversial as well:

pcnrv.blogspot.com/2018/08/...

[Bill2544 in reply to Tall_Allen]

With help from you and others on the site, I'm climbing the learning curve much more quickly than I'd imagined possible. Thanks!

[CalBear74]

Twenty-five years! Incredible feat! Sorry to hear of your recurrence. In the intervening years much has happened in drug development as you will learn. In my six years I have only used Casodex and Lupron with tolerable side effects. I am not a useful source, but I would suggest investigating certain natural supplements and prescription drugs which are being administered "off-label". The latter category includes Metformin and statin drugs. The latter was originally developed for type 2 diabetics and statins, as you surely know, is a CHOL management family of drugs now widely used to fight prostate cancer with the best of ADT and chemo drugs. Be certain to investigate the natural supplements tested by cancer researchers and reported on at pubmed.gov

Please consider reading Dr. Mark Sholz' book "The Key to Prostate Cancer". He and his 30 co-authors will update your knowledge base. It is a MUST read.

Of course, I have a bias that AKM Shamsuddin (Univ. of MD Medical School) and Rajesh Agarwal (Univ. of Colorado School of Pharmacy) have done marvelous work (separately in their own labs) studying IP6/inositol hexaphosphate/phytates/phytic acid.

Dr. Vaclav Vetvicka knows more about natural immunomodulators than anyone else doing experimental work and he is at the Univ. of Louisville Medical School. His 3rd edition of "Beta Glucan: Nature's Secret" is a gem.

CalBear74

[Bill2544 in reply to CalBear74]

Hi CalBear,

Thank you for your post. Your suggestions will certainly help me to get up to speed on current PCa treatments.

Bill

[HopingForTheBest1]

Sorry, but I am a bit confused by your PSA numbers. To me they appear extremely low. Mine has dropped from 20 in early June 2018 to 1.3 two weeks ago with combination hormone therapy (Eligard + Zytiga/Prednisone), and is expected to continue to drop with ongoing treatment.

[Bill2544 in reply to HopingForTheBest1]

Hi...It's long been my understanding that the rate of PSA increase -- often viewed in terms of doubling time -- is at least as important an indicator as the PSA level itself. I hope that others with a deeper understanding will chime in.

[Magnus1964]

Welcome, I too was diagnosed 26 years ago. I am 72 and been though a lot of different treatments.

The search box works for me. I am not sure why your having trouble with it. After entering your search terms just hit the enter key the icon does not do anything.

My question is at your age why not try ADT drugs as opposed to chemo. You could get many years from these drugs without harsh chemo.

[Bill2544 in reply to Magnus1964]

From what I understand at this early stage in my research, I agree that ADT is preferable to chemo for someone with my PCa profile.

[Bill2544 in reply to Magnus1964]

Ooops -- forgot to thank you about using the search box. I'm so used to clicking on or next to the entry that I completely overlooked the obvious!

[j-o-h-n]

Okay Prof. now that you've found us... Grade us....

Good Luck and Good Health.

j-o-h-n Monday 08/20/2018 1:01 PM EDT

[Bill2544 in reply to j-o-h-n]

From what I've seen so far, John -- A+

[Hidden]

Considering your low PSA, very long doubling time and age you might choose to do just watch everything for a while. Not advising, but no treatment is an option.

[Bill2544 in reply to Hidden]

Thanks, Gregg. That's certainly a reasonable possibility, but I'd like to have a clear strategy in place as I get additional PSA readings. My onco suggests every 4 months, and I'm actually hoping that the most recent PSA jump was due largely to normal test variance. We'll see!

[BigRich]

With your long DT and your age, and monitoring your PSA and blood work with your doctor, I don't believe your going to die from Pca. With monitoring if a problem developments, with consultation with your doctor; you can select a treatment program of your choice.

Rich

[Bill2544 in reply to BigRich]

Thanks very much for your insights, Rich. I've long assumed that my doubling times did not indicate a real problem for the very reason you indicate. However, my most recent PSA jump -- although not so significant itself -- represents such a clear shift in the meandering PSA trajectory (which I've been plotting for decades and largely ignoring) that my quant background leads me to pay more attention for now until further test results either confirm or question the shift. I plead guilty to being somewhat compulsive about planning ahead -- not only was I a longtime Boy Scout ("be prepared"), but my academic field was "strategic planning" (at Penn's Wharton School)! We're all products of our history.

[BigRich in reply to Bill2544]

Monitoring your blood will be your insurance. I was a sea explorer scout,and I got my Ph.D degree in computer research design. We are indeed creatures of our experience.

Rich

[Bill2544 in reply to BigRich]