Several weeks ago after zytiga failed some months back it appears that xtandi is the next to fail. My PSA is increasing, from 0.08 to 0.4 and now, three weeks later who knows, my next m.o appt is April 17th, labs and lupron and zometa, at the same time. My scans came back no new Mets, pet auxom and MRI. I ordered them and decifered them for myself, Very happy about that. Although in my humble opinion I think waiting several weeks to change a treatment plan that's not effective seems like a waste of precious time. Case in point, the previous zytiga failure resulted in A L3 met which was successfully blasted according to pet scan. I called my oncologist office to get updates or broach these issues and I get the impression these occasional calls are unwanted and not received well by nurses and assistants. Not all but a couple , I understand I am not the only patient with cancer on the west coast but this game is chess not checkers I am calling because my life depends on their actions and decisions, or lack of timely decisions. You guys are going down this road is this reasonable to expect a bit more urgency when there is evidence from the past that this is a fast moving freight train. Looking forward to your thoughts
I realize its hopefully a marathon bu... - Advanced Prostate...
I realize its hopefully a marathon but when should you sprint.
How were you able to read the scans without numerical data about SUV max in the sites vs background?
The written reports, on there findings.
Tall _ Allen I did another PSA today it has gone from 0.08 to 0.4 to 1.8 in 6 weeks. Xtandi is failing, my oncologist spoke with me tonight and indicated it's time to investigate clinical trials. Do you concur . I remember you suggested docetaxal with luquine. Do you believe that still may be my next best treatment plan, considering covid19 . I am going or teleconferencing a Dr at OHSU in Oregon on the 14th of April , hopefully with your thoughts and the collective opinions of the docs I can make the correct decision.
Diagnosed 2016. Gleason 4+5 9 Rad prostectomy
Radiation 37 sessions PSA rose. zytiga 18 months lupron, PSA rose to 3 .1 currently on zometa xtandi and lupron PSA rising again. Today 1.8 . Next treatment?
Docetaxel with Neulasta, or Xofigo with Provenge.
Thankyou, I will research.
I sympathise. My experience is very much the same.
At the outset, after they said "You've got advanced, aggressive and incurable cancer" I walked out in a bit of a daze.
As I was paying privately, thinking time was of the essence, I wanted things to happen.
Hormone treatment? Do me now.
Radiation? Ok. Now.
But it was a sooooo slow. And when I tried to ask questions and emails weren't answered and voice mails went nowhere, I turned up at the lead oncoligist's office with a list of questions.
He as most annoyed and pretty much kicked me out.
It was then I realised I was just a regular John, paying my fee and waiting in line.
They see cancer people all day, every day.
I was shocked. I thought having cancer would mean you got the best treatment and fast.
Not really. I remain very underwhelmed.
Ask about a trial and they shrug.
Diet? No benefit.
Supplements? Oh you're going calcium and vitamin d? No, nobody told me.
Oh it might stop your bones breaking. Thanks.
I could go on, but many of you know the story.
I had wish you the very best of luck.
That seems to be what it comes down to.
Thankyou it's sad and refreshing to hear somebody can relate.
Unfortunately we know the drill.... You just joined us so would you please be kind enough to update us with your bio info... All info is voluntary but it helps us help you and helps us too.
Reminder: Never put bananas in the refrigerator.................... leaves no room for the beer.
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/01/2020 2:00 PM DST
I had no idea when we started down this road, you’d get such a wide range of ideas on treatment and advice. You really have to advocate for yourself and research and listen to your gut. I think I’ve learned more from this site and the men on it than from any other source.
Thankyou. I do realize the current situation Is bigger than me. I laugh and enjoy my grandson and wife and pooch every day, I did have a brief chat with my oncologist yesterday and she said stay the course with xtandi for now the options are limited moving forward. And my PSA was several weeks ago a new one was ordered to where it's at currently.
I love life, although my biggest concern is my 100% dependent wife's future if I am unable. But I have learned one thing and that is, I can only control a tiny fraction of this. Thanks for your kind words.
In my anecdotal experience, once I was diagnosed with widespread mets, the PSA "number", itself, became relatively less significant on its own, compared to the overall situation with scans, symptoms, progression, etc. I've happened not to get the ultra-sensitive PSA test as a Stage IV patient. And even though my results come back in "tenths", I've come to feel that mentally rounding them off to the nearest whole number would have made no difference in any treatment decision for advanced disease. (Disclosure: I've had a PSA roller coaster ride from in the thousands, to 1.0 to 95.0 to 1.2 to 9.2 during the past 6 years 4 months since the original Very metastatic diagnosis.) In my experience, many oncologists tend to take this type of a "longer view" with Stage IV prostate cancer patients who have lots of widespread mets. That has been true of my local oncologist and also of specialists at UCSF.
In real life, though, the anxiety and hopes and fears while living through the first few years of being Stage IV can be really tough.
Individual responses can be all over the map. Some go on far-flung quests seeking second opinions from different doctors and specialists sites. Some dive into sadness and depression and have trouble "getting out of the pool". (The current COVID-19 situation helps none of this.) Everybody muddles through sometimes, in one way or the other.
I remember being pretty "testy", myself with some of my doctors and their staff, particularly during the first couple of years. In hindsight, I see some of that as coming from the anger and fearfulness within me. After several more years of interactions with the very same people, I see them differently now, and we all give one another a bit of a "break" on most things, and work with compassion toward doing what's probably the best for me, overall.
Good luck and calmness to you.
Charles
Thankyou very helpful.
Wisdom🤙🏽
Charles,
What you wrote means so much to me. I relate to this so much. Thank you.
Check your glasses (or what you're smoking)........was addressed to Bananabum...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/01/2020 6:47 PM DST
Sorry 😐
Don't be sorry..... be accurate........... 👀👀👀👀👀👀👀👀👍👍👍👍👍👍👍👍
BYB - but you don't have them anymore........
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/01/2020 6:55 PM DST
Still got mine, but I ain't saying nuthing. Don't want to be deleted.
hahhahaha I got mine two..........
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/01/2020 7:37 PM DST
I'm in a dilemma....Because of CV19 I can't redeem my deposit cans and bottles and right now they're taking up the whole kitchen and half the dining room.... 5 cents each....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/01/2020 7:42 PM DST
So you're hoarding cans, bottles and toilet paper now. You really need that toilet paper. I found a supply of toilet paper at the last desperate search. I am now an official hoarder.
I wish to inform you that hoarding is against Law..... I got me some reusable toilet tissue..... (one side, then the other side).....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/01/2020 7:52 PM DST
Ebay was offering toilet paper, new and used. Got mine at the .99 cent store. It cost $2.99
Wait a minute.... I was born on a Tuesday but not yesterday... Spend $2.99 in a 99 cents store? Now ya going tell me you deposit more than a dime in " The Dime Savings Bank of New York". You can fool some of the people some of the time and all of the people all of the time but you can't Con Edison...... I rest my case.........
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/01/2020 8:09 PM DST
😂
I have come into contact with about eight different Doctors. The majority have been responsive to intelligent questions. I try to be respectful to their training, but at the same time let them know that I am conversant on the disease. I always include, "what do you recommend?" Sometimes I comply and other times I have replied "not at this time" for a procedure and explain my reasons. Their enthusiasm for me as a patient fluctuates, but one thing they do seem to appreciate is that if we agree on a treatment plan - I will follow it to the letter.
Zytiga &Dexamethasone or what?
Time for a vacation, but worried about IADT
Update 6 months into Zytiga
Re-sensitizing Zytiga and Xtandi
