1. < Prostate Cancer

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.

melcanada | @melcanada | Jan 6 9:29am
In reply to @lag "If spot radiation is not advisable, Pluvicto/Lutetium 177 may be appropriate. That is what my husband..." + (show)
@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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lag | @lag | Jan 6 9:55am

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 8 6:00pm
In reply to @jacksgland "Perineal prostatectomy at 54. Undetectable PSA till recurrence at 68. Stage 4 at 76, and now..." + (show)
@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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2 replies
jacksgland | @jacksgland | Jan 8 8:43pm
In reply to @colleenyoung "@jacksgland, your timeline offers hope to many, living with stage 4 is possible. How are you..." + (show)
@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

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1 reply
melcanada | @melcanada | Jan 9 7:14am
In reply to @jacksgland "Colleen PSA almost undetectable, and testosterone at 7 (lowest reading). Side effects of therapy: Hot flushes..." + (show)
@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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melcanada | @melcanada | Jan 22 3:23am
In reply to @wooldridgec "I am 61 years old. I was diagnosed with metastatic de novo PC July 27 2022...." + (show)
@wooldridgec

I am 61 years old. I was diagnosed with metastatic de novo PC July 27 2022. My birthday of all days. Cancer showed up in my bones - spine, ribs, and hips. I had intense pain at first - I could not lay on my back. After an emergency Gall Bladder surgery - I still could not lie on my back. Went back to the ER - had CT and Bone scans which confirmed adenocarcinoma PC. Started Casodex (30 days) and 10 cycles Radiation to spine and 5 to ribs. Pain disappeared and has never come back. PSA started at 32 and quickly dropped to 1.005. A month later I started Darolutamide and Chemo therapy. I had 10 cycles of Docetaxel because my blood was other-worldy and 10+ cycles of chemotherapy has greater overall survival (OS) stats. Because I could handle chemo very well my doctor asked if I wanted to continue - so I did. At the end of my 10th chemo cycle my PSA dropped to 0.238 and continued to slowly drop to undetectable. I am a slow PSA dropper. All Genetic and Genomic testing also came back negative. I have Zometa infusions every month and eat a 60% plant based diet, exercise (bands & walking) and I work every day. My recent Bone scan showed great improvement and several spots are now resolved. My treatment was patterned after the ARSENS trial. It has been 5+ years since the ARSENS trial ended. At this time Overall Survival (OS) and time to Castration Resistance still has not been reached from the ARSENS trial.

Lastly, I do not look at or except the SARS data. The SARS data is based on ADT alone. This is a Chronic Disease - the medical community does not know how long anyone will live with this disease. I expect to live 20+ more years. Lastly, I find rest and peace with my relationship with Jesus.

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https://airomedical.com/blogs/treatment-guides/what-is-better-actinium-radium-or-lutetium-for-prostate-cancer
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melcanada | @melcanada | Jan 22 3:24am
In reply to @colleenyoung "@jacksgland, your timeline offers hope to many, living with stage 4 is possible. How are you..." + (show)
@colleenyoung

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

How are you doing on Relugolix and Xtandi?

Jump to this post

share charts https://airomedical.com/blogs/treatment-guides/what-is-better-actinium-radium-or-lutetium-for-prostate-cancer
The results of many clinical trials show the efficiency of Lu-177 treatment:
Increasing the 5-year survival rate by 30%;
Decreasing the risk of recurrence;
Improving the quality of life in 70% of patients.
The investigations in Ac-225 efficacy presented:
Lowering levels of an indicator of prostate cancer PSA in 80% of patients;
Decreasing of 50-80% of metastases;
Increasing the life expectancy.
The studies in Ra-223 showed:
Increasing average survival;
Decreasing risks of death by 30%;
Reducing pain and making the life quality higher.
We can say that the Lutetium-177, Actinium-225, and Radium-223 therapy significantly improve prostate cancer patients' condition. It makes a longer life expectancy because it is successful and does not cause significant harm.

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melcanada | @melcanada | Jan 22 3:25am

Lutetium-177 PSMA therapy is based on the notion that Lu-177 can stick to the surface of the cell membranes that make PSMA. Lutathera and Pluvicto, two drugs with lutetium, were the first to get FDA approval. Radiologists can use it if the tumor has spread to other body parts and isn't responding to chemo or hormone therapy.
Radium-223 dichloride, Xofigo, is used to treat advanced prostate cancer metastasizing to the bones. Radium's structure is also similar to that of Calcium, which is the main element in bone tissue. This similarity makes it easier for Ra-223 to get into bone metastases and kill cancer cells. Since there are no cancerous cells in the internal organs, this radioligand is given.
Actinium-225 PSMA therapy is a novel radioligand-based approach to treating cancerous tumors. The medication molecule can bind to the protein in the same way that Lutetium can. It is used in place of Lutathera in cases where the latter medication is ineffective against prostate cancer.

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patrick64 | @patrick64 | Jan 22 2:51pm
In reply to @robert570 "I will be 62 this fall. and I was diagnosed at 52. I had a prosectomy..." + (show)
@robert570

I will be 62 this fall. and I was diagnosed at 52. I had a prosectomy followed with radiation. Then I had 6 rounds of chemo followed by Zytiga and prednisone for almost 4 years. After that stopped working they put me on Xtandi which didn't work too good, it sort of stabilized my PSA though it started rising after 3 months. Then came 13 rounds of Jevtana chemotherapy. Every 3 weeks from May of 22 until February of 23. PSA was stable but it slowly started to rise. I'm now on Pluvicto. I have just completed my 2nd round of 6 at 6 weeks apart. Too soon to tell if is working. During these years my PSA has been between .20 and never above 3.5 during all of these treatments. I'm on xgeva shots for my bone mets on my rib cage, middle spine and on the back of my neck. The 2 on my back were fractures which have healed nicely. Almost no pain. I get Lupron injections every six months. All I can say is that everyone is different. I have a good sense of humor and just go on like nothing has happened. Fatigue is the biggest hurdle and I can deal with that. They told me at the beginning that they were going to throw everything but the kitchen sink at me in the beginning and they weren't kidding. Hope this helps and good luck!

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Good on you, good sir! You've been in this game longer than most of us and, like my father, your optimistic spirit and sense of humor is a big part of the success you've had thus far.

Your treatment protocol is identical to mine, surgery, chemo, radiation, ADT with Lupron and Zytiga for about the last year and a half. So far so good. I've had several negative PET scans and my PSA has been undetectable for the last year or so. Fatigue is the most significant side effect I've had along with the obvious ones like, zero libido, and hot flashes. I was diagnosed in August of '21 and I'm 59.

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