Stage 4 PC Longevity: Anyone have prostate cancer more than 10 years?

Posted by ringmastr1 @ringmastr1, May 26, 2023

There is a lot of great info on this forum. I am 54 and was just diagnosed in January with metastatic Stage 4 PC. (Hip, L4, Sacrum, and a small liver lesion). My PSA has gone from 359 in January to .24 last week and I feel great! I am curious to know how many guys on this forum have been treated for more than 10 years and what your quality of life is like. It is stories like this that will give me (and others) more hope. Peace to you all!!!

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

@jacksgland

Colleen
PSA almost undetectable, and testosterone at 7 (lowest reading).
Side effects of therapy:
Hot flushes
Not as strong 30 percent off)
Not really fatigued
Testicles feel softer
Dry skin
Labs really all normal excepting a small drop in rbc and hematocrit
Long term, who knows--worry about cardio and osteo

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My Xtandi not working after a year Jan Now they want chemo for spinal mets

Psa 9.8 up frpm 1.7 year ago Ideas welsome

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@colleenyoung

@jacksgland, your timeline offers hope to many, living with stage 4 is possible.

How are you doing on Relugolix and Xtandi?

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Colleen
PSA almost undetectable, and testosterone at 7 (lowest reading).
Side effects of therapy:
Hot flushes
Not as strong 30 percent off)
Not really fatigued
Testicles feel softer
Dry skin
Labs really all normal excepting a small drop in rbc and hematocrit
Long term, who knows--worry about cardio and osteo

REPLY
@jacksgland

Perineal prostatectomy at 54.
Undetectable PSA till recurrence at 68. Stage 4 at 76, and now 83.
Began relugolix 45 days ago. Will add xtandi.

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@jacksgland, your timeline offers hope to many, living with stage 4 is possible.

How are you doing on Relugolix and Xtandi?

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My husband was first diagnosed in 2005. After brachytherapy and external beam radiation, the cancer was in remission until 2011. When it recurred, he referred himself to Mayo and has been a patient of Dr Kwon ever since. After various oral meds and spot radiation to the spinal mets, he had chemo with taxotere in 2016. More spot radiation since, along with Lupron and Zytiga. After three years on Zytiga, another recurrence. More spot radiation until the spinal mets became too numerous in the last few months. Both Dr Kwon and the local medical oncologist recommended Lutetium 177/Pluvicto, and the first infusion is on January 17. Because my husband has already had chemo and radiation and oral meds, he was deemed eligible after a PSMA PET showed many spots with receptors for L177 to hit. The plan is for six infusions six weeks apart, the current standard protocol, as long as they are effective. The projected outcome is not a cure, but an extended remission.

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@lag

If spot radiation is not advisable, Pluvicto/Lutetium 177 may be appropriate. That is what my husband is about to start for spinal mets after Zytiga/abiraterone stopped working after 3 years.

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What is the projected out come? Did he have to do chemo first How many injections of 177 planned

Bless you

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@melcanada

whats next when Xtandi stops working on spinal mets

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If spot radiation is not advisable, Pluvicto/Lutetium 177 may be appropriate. That is what my husband is about to start for spinal mets after Zytiga/abiraterone stopped working after 3 years.

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23, 18, 10 years; Fabulous!!! Keep going Men!!!

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@mauinokaoi

18 years total. Prostatectomy 2006. Recurrence 2016. Lipron/Casodex since. Quality of life issues REQUIRES a positive attitude. Even if you have not been a positive person, remember that people get very good at what they spend their time doing. So practice, practice, practice.

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whats next when Xtandi stops working on spinal mets

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18 years total. Prostatectomy 2006. Recurrence 2016. Lipron/Casodex since. Quality of life issues REQUIRES a positive attitude. Even if you have not been a positive person, remember that people get very good at what they spend their time doing. So practice, practice, practice.

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@scullrower

23 years and counting. Started at Stage 3. I have taken steps to try to end my cancer once and for all so I’m going off all treatment beginning in three days. Time will tell. Best wishes and Happy New Year!

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Hope all goes well. I have been Stage 3 for 10 years, cannot get rid of the cancer, but taking Orgovyx since May 2022. No side effects for me. Staying active. Glad to see that 23 years.

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