Prostate Cancer Survivors

 

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

 

This forum is for the discussion of anything to do with Prostate Cancer.
There are only four rules:

  • No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
  • No harvesting e-mail addresses for Spam;
  • No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
  • Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making

Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.

Since this is an International Forum, please specify your location in your post.

General Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: New Topic

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.

John Bonneville

Re: New Topic

John:
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.

Re: New Topic

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.

John Bonneville

Re: New Topic

John:
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.

Re: New Topic

Fine Don and I trust when you come to roll the dice, a favourable outcome will occur. In the meantime take care and best wishes.

John Bonneville

Re: New Topic

John:
"Crap shoot"..."roll the dice". Beautiful!
Take care John. So good to interact with you from time to time.
Don O.

Re: New Topic

Great reading your dialogue here gentlemen and as a fellow "living with" PCa I am always interested in others stories as myself, I have been living with PCa since January of 2011.

Re: New Topic

William:
Always pleasant to receive favorable feedback from a fellow PCa warrior like yourself.
Best wishes Don O.

Re: New Topic

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.

RETURN TO HOME PAGE LINKS