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As has been my practice for awhile now, in the absence of any new YANA entries for a month or so, I submit one of my journal entries for review and comment; see below:
Title:"A Personal Update For Those Who May Be Interested,"
It has been nearly three months since I had a bad fall in my basement* and broke my left hip and forearm. After two operations and a five week stay in a local rehabilitation facility I thought it time for a brief journal update.
Thus far my treatment personnel have not discussed the reasons underlying my fall. I suspect it may be due to my age(84), my PCa and my PCa medications.
It is also unknown how complete my recovery might be. My personal goal is to navigate without the
use of a wheelchair, walker or cane. Whether or not I will ever return to (1) daily visits to see my beloved wife who resides in an Assisted Living Facility or (2) tri-weekly Pickle Ball excursions remains to be seen.
*Think in terms of a cement flooring.
I was only thinking of you yesterday and wondered how you have been travelling post Snuffy. Sad to read of your tumble and resulting #. Trust you are on the mend.
Well it has been quite a while since our initial PCa treatments. Twelve and a half years for me albeit I now have an upward trend in my PSA over the last few years. Still nowhere near biochemical recurrence as yet. Another three and a half years away at the current rate of velocity.
Now what is all this about Turkey tails and Mushrooms Don? Terry (God bless him) would be in raptures with such an exotic combination. So spill the beans. Is this the new Jane P diet. She was Terry's pin up girl for many moons if you recall.
You know, looking back where we came from Don, I have to say it has been a remarkable journey for both of us. Terry if you recall had 20 years post Dx as his target. He fell short by a couple of years if I recall correctly. So what is your take on Terry's innings? Doable for both of us you think? My gut feeling is that our old mate Terry innings will be hard to beat and that perhaps is as should be.
What a pleasant surprise; good to hear from you! Glad to hear you are doing so well.
As for the mushrooms, a longtime cyberspace buddy recommended these to me based on their presumed effectiveness as anti-cancer agents. Although a tad skeptical I incorporated them into my protocol for several months. As my choice of terms undoubtedly suggest I have since eliminated them. Whether or not they proved effective who is to say.
Xtandi has kept my PCa under control, but I suspect its effectiveness has about run its course. I also suspect Lupron is in my future. As you may know from my journal I have diligently avoided this drug over the years because of its dastardly side effects.
Without Terry YANA is no longer the vibrant forum it was in its heyday. I'm doing what I can to extend its relevance. If you were to come back on board it would indeed be a blessing. .
Best wishes Don O.
Yes Don I can see from the paucity of posts that YANA has somewhat passed it's heyday. Not unique to just YANA though. I wonder if some of the old PCa warriors are still about?
Now regarding Lupron or Lucrin as it known down here. Don I did 9 months of neo adjuvant ADT prior to EBRT. From what I recall my main issue was mood swings particularly aggression. Hot flushes, or flashes as you would say, were tolerable. And as for any appreciation of the feminine form, I may as well be have been looking at a fence post. However I suspect those adverse side effects are somewhat lessened by progressing age factors. Remember I was in my 50's back then (70 now). Several of the guys in their 80's at our local prostate cancer support group appear to tolerate ADT well, with minimal/no issues to report. Perhaps one cycle might be worth a try Don and see how you go.
Hi Don, silly me I just realised that you have been on enzalutamide (enzo) but I see no mention of abiraterone (abby). I know of several guys who have done well when swapped over to the other med.
In Australia there is considerable debate if abby and enzo should be post first line chemo (docetaxal). May I ask if your recurrence is still localised? If so, then a localised focal Rx of say EBRT, HiFU, or Brachy might be appropriate. In Australia we are starting to see repeat EBRT after a decade or so, post initial Rx. If not then docetaxal would probably the next step followed by abby and then cabazitaxel.
Don't forget the good old watch and wait as well. It just depends on your circumstance and disposition plus the bias of your treating doctors. But as you know only to well, it is we the patients that tend to drive the agenda.
So far as I know my PCa remains localized. I have explored each of the non-drug therapies you mention, i.e., EBRT, HiFU and Brachy and determined the results and/or side effects to be unacceptable. When you have nothing better to do, you can review a few of my recent journal entries. I discuss these options and outline my reasons for sticking with PCa meds for the time being. Zytiga may well be worth a try when Xtandi loses its effectiveness.
As far as "we the patients tend to drive the agenda" I couldn't agree more.
I am fortunate to have you as a resource. It's my hope we can stay in touch and exchange ideas on occasion.
Best wishes Don O.
Don I had a read of your blog re the various therapies we discussed previously. For whatever reason, your treatment modalities as related, are reserved for advanced metastatic disease here in Australia. As you say, your recurrence appears to be localised, thus I am somewhat puzzled why your clinicians chose to bring out the big gun (abby/enzo), unless of course at your request/cost. Please understand that clinical approaches twixt your country and mine don't always coalesce.
As I said previously, in my view a localised focal therapy is very appropriate in your/my circumstance. I say this because irrespective of the therapy chosen, delay to progression will occur particularly given the longevity of our journeys thus far. Destruction of the tumor DNA (Gleason grading of course not withstanding) will provide an ideal opportunity to put the big guns back in the holster, for when they are really needed, when progression outside the prostate capsule takes place, assuming of course that it ever does.
In about three and a half years time, assuming my PSA velocity continues at the same rate, I too will be confronted with the same dilemma as you Don. At present I am leaning towards LD brachy. My PSA is rising by 0.16 every six months. My nada is 2.05. Current PSA is 0.81.So I have done well considering my GL was 7 (4+3) way back in in early 2008 when I was treated with EBRT.
No doubt a biopsy will be required prior to a Rx choice decision. Who know's if the tumor is Gl 5 or 6, watchful waiting may be my choice. My lifespan is only about another 10 years at best, due to co-morbidity. I am 70 now. So allowing say another 3 years to biochemical recurrence, combined with a minimally effective local focal therapy, say another 3 years, the remaining 4 years are of little consequence to me, assuming I will probably drop dead of a cardiac event anyway. I guess my Rx choice is all about buying time whilst acknowledging that time is finite. I guess it just depends on your perspective Don. To me quality of life is paramount. When I no longer have that, my journey will be completed and I am very comfortable with that.
Sorry to waffle on Don. Few answers I know, but at least I have given you my perspective of a journey we are both sharing.
Xtandi was one of several options I considered following my recurrence.
My Sept.10,2018 journal entry provides a summary of four other options I considered . My concluding thoughts on one of these, i. e., H D Brachy appear below:
"Of those listed H D Brachy appears most acceptable to me. Is it preferable to plugging away with various forms of ADP? That my friends is the question of the day. It's a crap shoot, always has been, always will be-- this time with far less favorable odds than when I opted for PBRT at the outset. In any event I intend to let the matter percolate for the time being."
I am very much interested in what you decide and how you fare as you proceed. You undoubtedly know how to track my progress.
Best wishes Don O.
Glad to read this back-n-forth. Diagnosed in Oct 2009 at PSA 4.6 Gleason 6 one core 5%, I have been on Active Surveillance since. Slow progression in PSA, few ups and downs (one high of 10.5 in 2013, then quickly back to 5. A year ago 7.6, just today 12.5. Will see what Dr says at appointment in 2 weeks. Hard to believe we lost Terry 6 years ago last week. Best to all.