life without treatment : I have been... - Advanced Prostate...

Advanced Prostate Cancer

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life without treatment

Tmetz profile image
68 Replies

I have been battling advanced prostate cancer for 8 years. My question is: how long can I live if I stop treatment?

Asking for a friend.

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Tmetz profile image
Tmetz
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68 Replies
mrscruffy profile image
mrscruffy

My father chose that option and he lived for 6 months. The last month basically non responsive

Tmetz profile image
Tmetz in reply to mrscruffy

thank you

Tall_Allen profile image
Tall_Allen

No one has that crystal ball. But I can assure you that stopping therapy will be painful and will degrade his quality of life.

Tmetz profile image
Tmetz in reply to Tall_Allen

thank you

larry_dammit profile image
larry_dammit

scared to think about it. I figure that the cancers will continue to grow and the end will be near ?! 6 1/2 years here and wondering myself. Keep up the fight warrior,every day alive is a winner 🙏🙏🙏

Tmetz profile image
Tmetz in reply to larry_dammit

thank you!

bluepacifica profile image
bluepacifica

My husband is in his 19th year, stage IV, Gleason 10, etc. Still gets the Lupron shot every 6 months.

Tmetz profile image
Tmetz in reply to bluepacifica

God bless him!

MrDon2 profile image
MrDon2 in reply to bluepacifica

Taking anything else other than the shot?

Tmetz profile image
Tmetz in reply to MrDon2

no

bluepacifica profile image
bluepacifica in reply to MrDon2

Not now, but he's had Casodex in the past as well as Zometa infusions which really helped his bones.

Tmetz profile image
Tmetz in reply to bluepacifica

thank you!

Iloveyoudad profile image
Iloveyoudad in reply to bluepacifica

Hi. Is your husband on Xtandi or Zytiga besides Casodex and Lupron? Thank you

bluepacifica profile image
bluepacifica in reply to Iloveyoudad

Just Lupron every 6 months and Lexapro. He just got back all his blood work and psa was zero and the rest of his numbers were good!

ch922455 profile image
ch922455 in reply to bluepacifica

is he also on abiraterone/xytiga or is lupron his only treatment? We are doing both - 6 years in.

Tmetz profile image
Tmetz in reply to ch922455

lupron and Zytiga

groundhogy profile image
groundhogy

lets not find out. Lol

Tmetz profile image
Tmetz in reply to groundhogy

good idea!

Shamrock46 profile image
Shamrock46

That's where we're at. My husband was 1st dx in 2014 and had 1st recurrence in 2018, 2nd last Fall. PSA started doubling every 3 mos. while Lupron/Xtandi produced many and worsening SEs. This January he suddenly got very weak, had trouble standing up, walking and doing stairs. He was taken off all meds...MO said in Jan. that she expects PSA to rise even higher/faster. So far he's doing as well as can be expected...very tired, a few short-term memory problems and a one-time recent sharp neck pain probably from a metastasis in T1 that only lasted a short time. She told him his prognosis was about a year, but of course no one knows anything exact about that. He feels he can't endure any more SEs, especially with the severity he has experienced and is trying his best to appreciate each day left. Wishing you all God's blessings!

Tmetz profile image
Tmetz in reply to Shamrock46

Thank you! Wishing him nothing but the best!

Shamrock46 profile image
Shamrock46 in reply to Tmetz

Thank you! At least at this point he's not experiencing any pain...hoping that lasts! He's waiting as long as possible to have his implanted defibrillator shut down in cardiologist's office.

Tmetz profile image
Tmetz in reply to Shamrock46

God bless both of you!

Seasid profile image
Seasid in reply to Shamrock46

Why would they shut down his defibrillator?

Shamrock46 profile image
Shamrock46 in reply to Seasid

If and when he gets to hospice stage they don't want it shocking his heart. We already have DNRs in place.

Seasid profile image
Seasid in reply to Shamrock46

Sorry for my question, what is DNRs? And why is it not good to have a pacemaker in a palliative care?

Shamrock46 profile image
Shamrock46 in reply to Seasid

Living will abbreviation for "Do Not Resuscitate" meaning no extraordinary measures. It's for when a person is expected to live less than 6 mos. in hospice care and a defibrillator will keep shocking the heart to keep someone alive. Defibs also act as pacemakers but have the ability to shock as well. Cardiologist says it feels like you're hit with a bat...not what you want when you're in last days.

Seasid profile image
Seasid in reply to Shamrock46

I am using a CPAP machine in order to be able to breathe during the night when I sleep. Would they shut down that one too during my last 6 months of my life in order to help me to transition quicker?

Shamrock46 profile image
Shamrock46 in reply to Seasid

I really have no experience with CPAP so don't know the answer. Guess it would depend on what you might have in a living will.

Seasid profile image
Seasid in reply to Shamrock46

Thanks

Ashikpong profile image
Ashikpong

I know a guy who after chemo and one Yr of lupron stopped all kinds of treatment. He's now in his 9th month without and feeling much better than when he was receiving treatment . People are different though

Tmetz profile image
Tmetz in reply to Ashikpong

thanks

Boywonder56 profile image
Boywonder56

You pays your money( or you dont)....yous take your chances....spin the chamber...eventually it goes.... bang....jmho...bw

Tmetz profile image
Tmetz in reply to Boywonder56

truth

Kaliber profile image
Kaliber in reply to Boywonder56

I hear that ….💪💪💪

Tmetz profile image
Tmetz in reply to Kaliber

thanks

SpencerBoy11 profile image
SpencerBoy11 in reply to Boywonder56

Only if you are strong enough to pull the trigger.

addicted2cycling profile image
addicted2cycling in reply to SpencerBoy11

Why not shoot up with some Testosterone, might kill ya but could also go out with a big smile.

Tmetz profile image
Tmetz in reply to addicted2cycling

yeah, good idea

SpencerBoy11 profile image
SpencerBoy11 in reply to addicted2cycling

At 85, ADT for 3 years, widower for 18 months, and a dick the size of pencil eraser, don't think there is enough testosterone in the world to be effective 😜, but I am going take a vacation in July to see what happens!

addicted2cycling profile image
addicted2cycling in reply to SpencerBoy11

Take it from me, the T helps one's whole body feel better and that will improve the Quality of Life, just maybe not the quantity.

Tmetz profile image
Tmetz in reply to addicted2cycling

thanks

Tmetz profile image
Tmetz in reply to SpencerBoy11

God bless you, sir!

Boywonder56 profile image
Boywonder56 in reply to SpencerBoy11

Maybe itll go from pencil eraser to elevator button.....like mine😜

Boywonder56 profile image
Boywonder56 in reply to addicted2cycling

And maybe a lil wood.....

addicted2cycling profile image
addicted2cycling in reply to Boywonder56

A tune that is a brain worm for myself --

youtube.com/watch?v=4-bD0ZG...

Cooolone profile image
Cooolone

The usual question is How Long WITH treatment. Reverse psychology is interesting... But "timing" isn't something they monitor much, and nobody knows that answer as the call comes to all at some point. With 77yrs of age, the statistical life expectancy has already been met (U.S.) so every day is already past expiration! Just sayin... Especially when there's so many things that can occur which can have life impact as we age.

But I would digress and assume, yes assume, that unless there's specific circumstances to "stop" therapy, that the law of averages provides much more "time" with continued therapy, than without. But nobody knows when the bell might ring! Especially when it rings for thee!

Best Regards!

Keep on Truckin'

Tmetz profile image
Tmetz in reply to Cooolone

Thank you, sir!

Shamrock46 profile image
Shamrock46 in reply to Cooolone

Right! My husband said he hopes he has a heart attack 1st....he's 77 as well with bum heart.

Tmetz profile image
Tmetz in reply to Shamrock46

sending love and prayers!

maggiedrum profile image
maggiedrum

I'm in that situation. The short answer is no one can tell you until it gets very near the end stage. I have done as much research as I can. There is very little data out there. Drug companies don't fund doctors to research and track this since there is no payback from drug profits. It is very expensive research for foundations, Universities, NIH, etc. etc. since it requires many years of data gathering. Ans, the data is hard to correlate since every one is a different person with different co-morbiities and life events. I've asked my MO and he just says "no one knows".

Most men with PCa are getting some kind of treatment. I'm not because of the QOL side effects of what is available will keep me from going through those. The graphs and estimations I have seen for time to death all include those who are getting some kind of treatment. That also include those like us but I never seen that info broken out.

Tmetz profile image
Tmetz in reply to maggiedrum

thank you so much!

SteveTheJ profile image
SteveTheJ

He'll find out.

Tmetz profile image
Tmetz in reply to SteveTheJ

so true

RMontana profile image
RMontana

Did you get a Decipher test or any other Genomic testing? That could help you with determining what your looking at...but take a look at some of the data from this post...not all bad news, even with bad Deciphers; see podcast at Min 2:50.

Min 2:50; OS Overall survival PCa

-35% died from prostate cancer in 18 years

-30% had no disease

-all high-risk cancer patients

-need for better stratification and risk prediction

...if you dont have Genomic testing, consider getting some done...even if your RP was some time back. Rick

healthunlocked.com/active-s...

Tmetz profile image
Tmetz

thanks

j-o-h-n profile image
j-o-h-n

Ok my great mystical crystal ball............. "please tell me how long Tmetz will be around if he stops his treatment? Answer "How the hell would I know asshole, you're asking a bowling ball".

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/14/2023 10:00 PM DST

Tmetz profile image
Tmetz in reply to j-o-h-n

thanks, loved it!

addicted2cycling profile image
addicted2cycling in reply to j-o-h-n

j-o-h-n wrote -- " Ok my great mystical crystal ball ... "

Dang - even pea sized crystal balls ain't gonna fit in my now 8 year since orchiectomy empty sack.

Tmetz profile image
Tmetz in reply to addicted2cycling

God bless

ARIES29 profile image
ARIES29

I said I would never go on vacation again after recently the MO put me on Zoladex but now I am badly affected by oestoarthritis I have to stop or go back to Firmagon. By stopping treatment you are giving the cancer the go ahead signal.

Tmetz profile image
Tmetz in reply to ARIES29

so true!

Seasid profile image
Seasid in reply to ARIES29

Go back to Firmagon. I just celebrated the 5 years of anniversary of getting it with my Oncology nurse at the King horn cancer centre in Sydney, Darlinghurst. I bought her Marin collagen and my last PSA was 0.25.

ARIES29 profile image
ARIES29 in reply to Seasid

I cant help thinking they did not want to see me at the cancer centre every month for the Firmagon shot so after next visit to the MO I will learn to inject myself.

Good old Darlinghurst in down town Sydney.

Seasid profile image
Seasid in reply to ARIES29

Yes

The life expectancy is the longest in our suburb in Australia.

Guess why.

Since 2014. Chemo last year knocked the stuffing out of me and only was effective in reducing PSA (relevance???) for 7 months. Put on xandia and same thing over four moths. Not on any drugs now but Tamulosine and Edoxaban every other day. No indication that it is in the bones but metastersized from day one in the seminal node. Junior Doctor told me recently "I'm at the end of the line" whilst I waited in Hospital for an Op. for removal of a kidney stent and placing a Nephrostomy. Only did it to impress graduates stood at the end of the bed. Not impressed! I now have Nephs to both kidneys as I was told drainage wasn't good and backflow is damaging Kids. Can live with it as not getting out of bed all hours of the night. Right kidney produces 1.5-2.00 litres overnight whilst Left only ever produces half the amount. Interesting but no Doctor explained if this is normal. . Thinking do I want to keep having Zoladex shot every three months? Am over 75. PSA not risen to level pre-chemo. Take Nettle root and a grate of nutmeg as well as other supposedly anti cancer foods. Chemo/ Xandia or it could have been Cellulosis hollowed out my chest and made me look like Gollam. Still not prepared to shuffle the mortal coil but won't be sunbathing this year! Good luck with your decision, whatever.

JJUl profile image
JJUl in reply to positive-thoughts

Hi, been reading posts from this forum for a while to help me understand and cope with husband's PC ordeals. Your post was particularly relevant as he has recently had blocked ureter issues to one kidney. This showed up on one of his numerous scans. He went in to undergo stent placement which failed. He refused a neprostomy as he did not want any external drainage placed. He has been told his kidney will eventually just die and he can continue on one? I am not fully convinced this is the way to go especially if someway further down the track the same thing happens to his remaining kidney. He is 76 this year and fighting for 12years. Hard to understand what the next few years will hold for his health. So thankyou for your positivity.

positive-thoughts profile image
positive-thoughts in reply to JJUl

I had a stent removed supposedly from my left Kidney before a Nephrostomy was placed in the Kidney. Strange thing that if I recall correctly it was my right side kidney that seemed to shed a little blood after this op. ? Bizarre or what? I'm also 76 and although the Nephs are an inconvenience I wouldn't want to let one Kidney die for want of a little extra annoyance in life. The drainage system for me at night is my RHS drains into the frontal day pouch and then into the extention to the overnight 2 litre bag. The LHS being next to the side of the bed I replace the day bag with a direct flow into an overnight bag. Both bags hang on a rack next to the bed. I'm contemplating a trip to France which normally would have involved 15 hours in the driving seat. This is going to be a challenge and I may need more than comfort stops. Perhaps an overnighter. Unfortunately the 2 litre night bags are not easily adaptable for travel but I'll figure something out. Flight trip not convenient for varous reasons. Need to sort out our property over there.

Tmetz profile image
Tmetz

thank you sir, sending prayers to you

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