1. < Prostate Cancer

Metastic prostate Cancer Survivors - longevity and quality of life

Posted by ringmastr1 @ringmastr1, Feb 26, 2023

I was just diagnosed at the beginning of January and of course the news hit me hard. I have found a lot of hope in the discussions within this group. I am curious to know how long ago people in this group were diagnosed with metastatic prostate cancer and what your quality of life is like. Right now I have no symptoms from the cancer itself other than weight loss (which I am actively monitoring and dealing with via extra eating) and I have no side effects from the medications the doctors are prescribing. I know that I am at the beginning of this journey and I hope that my current status stays the way it is for many years. We all need to have hope, and I am learning a lot about traditional and new Treatment options.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

kpgnsm | @kpgnsm | Mar 5, 2023
In reply to @dsingstock "Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov,..." + (show)
@dsingstock

Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov, went to 0.4 in Jan. Was ln Casodex Nov and Dec. Felt good then. After Eligard 6 month injection and Xtandi noticed a big slow down in energy, being tired, hot flashes, and with the loss of testosterone, my testicles and penis have shrunk making it difficult to pee. This morning noticed hair in the shower after washing it. Is all of this normal? Since my psa was 0.4 I intend to see if the Doc's will maybe stop the Eligard but not the Xtandi for 6 months if the psa is much lower than the 0.4 and see what happens. My prostate cancer returned after 12 years as stage 4 and metastasized on ribs 7 and 9. Amy comments? Thanks.

Jump to this post

YA it comes back----I was told that I would be on the Eligard for the rest of my life and it would be supplemented with other testosterone blocking drugs. Eligard keeps the cancer cells from growing the the other drugs block the receptor sites so testosterone cannot FUEL the cells (sort of like retarding them) so they will be there but will not grow as rapidly. Bascially we are lowering the total testosterone in the body which should decrease its ability to stimulate more growth in cells. Sort of like halting it where it is.---but not curing it.

REPLY
markheuer | @markheuer | Mar 6, 2023
In reply to @dsingstock "Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov,..." + (show)
@dsingstock

Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov, went to 0.4 in Jan. Was ln Casodex Nov and Dec. Felt good then. After Eligard 6 month injection and Xtandi noticed a big slow down in energy, being tired, hot flashes, and with the loss of testosterone, my testicles and penis have shrunk making it difficult to pee. This morning noticed hair in the shower after washing it. Is all of this normal? Since my psa was 0.4 I intend to see if the Doc's will maybe stop the Eligard but not the Xtandi for 6 months if the psa is much lower than the 0.4 and see what happens. My prostate cancer returned after 12 years as stage 4 and metastasized on ribs 7 and 9. Amy comments? Thanks.

Jump to this post

I have been on Eligard and Xtandi for about 16 months

My side effects are similar to yours except I have chills instead of hot flashes

The status of the cancer is stable below 1.0

Does anyone else get chills?

REPLY
ken1946 | @ken1946 | Mar 6, 2023
In reply to @dsingstock "Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov,..." + (show)
@dsingstock

Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov, went to 0.4 in Jan. Was ln Casodex Nov and Dec. Felt good then. After Eligard 6 month injection and Xtandi noticed a big slow down in energy, being tired, hot flashes, and with the loss of testosterone, my testicles and penis have shrunk making it difficult to pee. This morning noticed hair in the shower after washing it. Is all of this normal? Since my psa was 0.4 I intend to see if the Doc's will maybe stop the Eligard but not the Xtandi for 6 months if the psa is much lower than the 0.4 and see what happens. My prostate cancer returned after 12 years as stage 4 and metastasized on ribs 7 and 9. Amy comments? Thanks.

Jump to this post

I found out my cancer had metastasized in October of 2018. I have been off the Lupron injections after two years. I did 44 photon radiation treatments.
I had a robotic radical proctectomy. in 2018. My penis and testicles shrank and quit working. I had no libido. My libido has returned but nothing seems to work, Viagra and Cialis do not seem to help. I have a cancer masseuse who is willing to massage the groin area to try to stimulate the nerves. I think it helps psychologically.

REPLY
garymun | @garymun | Mar 6, 2023

I was on leupron/eligard intermittent since 2017, w my Urologist targeting to keep my PSA below 5, which worked until early 2022, when I & a 30+ PSA convinced the Urologist to order some scans, last about 5 years prior with ND conclusion. The 2022 scans showed massive metastasis to Stage 4. Oncologist prescribed leupron every 12 weeks like a clock, bicalimate, & zometa infusions. PSA dropped to mid 3.0s & was trending down, but I calced it would take 8 years to achieve his 0 PSA target. Started Xtandi on Jan 1, 2023 & PSA dropped to .77 in 5 weeks and .5 in 7 weeks.
Radiologist report on Bone Scan several weeks ago in comparison with prior showed some lessions actually slipped into ND. Nothing quantifiable, would have preferred some stats, but all good & offered to do an Irish jig for my Oncologist, aka "The General". He seems to be of the same "don't mess with success" school as other commenter. Some fatigue, but a new puppy and phys therapist r helping work thru this. I would say u have to expect some fatigue, especially w Xtandi. The leupron makes me moody at the beginning & end of the 12 week cycle. I used to have moderate body hair, no more; better than waxing. Basically a unic now, but I am alive feel better than at stage 4 diagnosis a year ago. Asking my liberal friends what pronoun I should use. The General dropped the biclimate (sp). I think you need to have some kind of exercise routine before signing up for any PC chemo regime. If you want to stretch your Stage 4 survivorship, you have to accept some downside & unfortunately drop many of your high impact/high risk recreation pursuits. That has been most difficult for me, but I am slowly coming to accept the new rules for life. The good news is you make the rules, but hopefully have competent professionals in helping u weigh the tradeoffs.
Gary M,
Gleason 4/3, OD 2010

REPLY
1 reply
dsingstock | @dsingstock | Mar 7, 2023
In reply to @garymun "I was on leupron/eligard intermittent since 2017, w my Urologist targeting to keep my PSA below..." + (show)
@garymun

I was on leupron/eligard intermittent since 2017, w my Urologist targeting to keep my PSA below 5, which worked until early 2022, when I & a 30+ PSA convinced the Urologist to order some scans, last about 5 years prior with ND conclusion. The 2022 scans showed massive metastasis to Stage 4. Oncologist prescribed leupron every 12 weeks like a clock, bicalimate, & zometa infusions. PSA dropped to mid 3.0s & was trending down, but I calced it would take 8 years to achieve his 0 PSA target. Started Xtandi on Jan 1, 2023 & PSA dropped to .77 in 5 weeks and .5 in 7 weeks.
Radiologist report on Bone Scan several weeks ago in comparison with prior showed some lessions actually slipped into ND. Nothing quantifiable, would have preferred some stats, but all good & offered to do an Irish jig for my Oncologist, aka "The General". He seems to be of the same "don't mess with success" school as other commenter. Some fatigue, but a new puppy and phys therapist r helping work thru this. I would say u have to expect some fatigue, especially w Xtandi. The leupron makes me moody at the beginning & end of the 12 week cycle. I used to have moderate body hair, no more; better than waxing. Basically a unic now, but I am alive feel better than at stage 4 diagnosis a year ago. Asking my liberal friends what pronoun I should use. The General dropped the biclimate (sp). I think you need to have some kind of exercise routine before signing up for any PC chemo regime. If you want to stretch your Stage 4 survivorship, you have to accept some downside & unfortunately drop many of your high impact/high risk recreation pursuits. That has been most difficult for me, but I am slowly coming to accept the new rules for life. The good news is you make the rules, but hopefully have competent professionals in helping u weigh the tradeoffs.
Gary M,
Gleason 4/3, OD 2010

Jump to this post

Thanks for the info, as the new kid on the block appreciate all personal information regarding Xtandi and Eligard. Heard that Xtandi was labeled the miracle drug. Will find out in 2 weeks if psa has dropped below 0.4. Ya know it us interesting how your other half becomes your best friend and not your lover once you are treated for prostate cancer. I have had a best friend now since 2010.

REPLY
garymun | @garymun | Mar 7, 2023

Sex is over-rated, but PC really sucks. IMHO it is the ultimate menopause equalizer.
My Xtandi/ Leupron routine hasn't hit your PSA goal yet, but a bone scan results should be a better indicator, even if it relies on Radiologist just eyeballing it. Enjoy life, hot flashes, dizzyness and such be damned!

REPLY
1 reply
Tom | @tom86 | Mar 7, 2023
In reply to @dsingstock "Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov,..." + (show)
@dsingstock

Been on Xtandi and Eligard since Jan. So far my psa, which was 20.8 in Nov, went to 0.4 in Jan. Was ln Casodex Nov and Dec. Felt good then. After Eligard 6 month injection and Xtandi noticed a big slow down in energy, being tired, hot flashes, and with the loss of testosterone, my testicles and penis have shrunk making it difficult to pee. This morning noticed hair in the shower after washing it. Is all of this normal? Since my psa was 0.4 I intend to see if the Doc's will maybe stop the Eligard but not the Xtandi for 6 months if the psa is much lower than the 0.4 and see what happens. My prostate cancer returned after 12 years as stage 4 and metastasized on ribs 7 and 9. Amy comments? Thanks.

Jump to this post

At 12 years post surgery, how often were you required/scheduled for PSA testing? We had read that after 10 years it wasn't necessary. Sounds like that is not the case. Thank you for posting your journey.

REPLY
1 reply
markheuer | @markheuer | Mar 7, 2023
In reply to @tom86 "At 12 years post surgery, how often were you required/scheduled for PSA testing? We had read..." + (show)
@tom86

At 12 years post surgery, how often were you required/scheduled for PSA testing? We had read that after 10 years it wasn't necessary. Sounds like that is not the case. Thank you for posting your journey.

Jump to this post

My cancer recurred after more than ten years

REPLY
1 reply
Tom | @tom86 | Mar 7, 2023
In reply to @markheuer "My cancer recurred after more than ten years" + (show)
@markheuer

My cancer recurred after more than ten years

Jump to this post

Thank you for the reply. What was the span between your PSA testing at timt?

REPLY
1 reply
markheuer | @markheuer | Mar 7, 2023
In reply to @tom86 "Thank you for the reply. What was the span between your PSA testing at timt?" + (show)
@tom86

Thank you for the reply. What was the span between your PSA testing at timt?

Jump to this post

What does timt mean?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.