I know of many people that have had stage four and have lived for many years. I’ve been at stage four for about six years now and had prostate cancer for a total of 15 years.
Everyone is different. What is your Gleason score? What was your PSA when you were biopsied? Have you had a decipher score? Have you had a PSMA pet scan, what did it show? What year did you first find that you had prostate cancer? What is your PSA now?
What treatments have you had? What particular issues have shown that you have stage four? Do you have metastasis in multiple places? How old are you.
Many questions, but it will help figure out whether you have many years ahead of you, mostly due to the quality of prostate cancer treatments these days.
My story of prostate cancer:
I retired in March of 2018. Was diagnosed with pc sometime in July of 2018 and had surgery to remove my prostate. I was a 4+4.
I had psa tests every 3 months and then in late 2019 my psa started rising. I have had all of my diagnoses/treatments at the Mayo Clinic in Arizona. In January of 2020 I started radiation treatments every weekday for 3 months. After this my psa was not detectable. I tested every 6 months and it stayed undetectable until January of 2024. Had mri and pet scan and cancer showed in my prostate region. So more radiation but only for 5 days and in different area than previous treatment. Then was sent to oncologist. I was given my first lupron shot in March of 2020 and also started taking arbiraterone tablets daily. The only side effects I had at this time was hot flashes, bothersome but easy to deal with. 6 months later my psa. Still undetected and had my 2nd Lupron injection on 9/30. A week after this injection I started feeling very fatigued and could not walk more than a 100 yards before my legs became super weak and wobbly. I have started physical therapy for about a month now 3 times a week as I read on this forum it might help. So far it has not and I can barely walk to my car from pt clinic. I feel like only half a man. My family always has to ask before we go somewhere “will you be able to walk that far” ? I always say yes even knowing I will be exhausted the whole time.
I will get my 3rd Lupron injection in March of 2025. I am concerned that my fatigue will even get worse after that. If it does not sure what I will do. (Hopefully not a wheelchair as I do not want to be a real burden on my family)
I see my oncologist in January 2025 to go over a bone density test I had last month. I will discuss my fatigue and weakness with her then and see if there’s
An alternative treatment option.
I am 70 and still beating this cancer but it is a rough road. I have read on hear even after the last Lupron injection it takes a longtime for testosterone levels to get back up which would elliviate the fatigue and weakness with.
Anyone else with a similar treatment course and similar side effects??
When you’re in your 70s recovering testosterone is very slow. I had robo surgery and a year of ADT at age 74 and starting in December 2021 with aggressive high risk G9 CR PC. After surgery and ADT my PSA dropped and has remained at .01 and my T is 104 and it had been as low as 7. My doctor says that I am completely over the ADT effect but the low T not rising is due to my age (soon to be 78)
I feel ok and happy to be alive with a low PSA and the low T is manageable for me.
My story of prostate cancer:
I retired in March of 2018. Was diagnosed with pc sometime in July of 2018 and had surgery to remove my prostate. I was a 4+4.
I had psa tests every 3 months and then in late 2019 my psa started rising. I have had all of my diagnoses/treatments at the Mayo Clinic in Arizona. In January of 2020 I started radiation treatments every weekday for 3 months. After this my psa was not detectable. I tested every 6 months and it stayed undetectable until January of 2024. Had mri and pet scan and cancer showed in my prostate region. So more radiation but only for 5 days and in different area than previous treatment. Then was sent to oncologist. I was given my first lupron shot in March of 2020 and also started taking arbiraterone tablets daily. The only side effects I had at this time was hot flashes, bothersome but easy to deal with. 6 months later my psa. Still undetected and had my 2nd Lupron injection on 9/30. A week after this injection I started feeling very fatigued and could not walk more than a 100 yards before my legs became super weak and wobbly. I have started physical therapy for about a month now 3 times a week as I read on this forum it might help. So far it has not and I can barely walk to my car from pt clinic. I feel like only half a man. My family always has to ask before we go somewhere “will you be able to walk that far” ? I always say yes even knowing I will be exhausted the whole time.
I will get my 3rd Lupron injection in March of 2025. I am concerned that my fatigue will even get worse after that. If it does not sure what I will do. (Hopefully not a wheelchair as I do not want to be a real burden on my family)
I see my oncologist in January 2025 to go over a bone density test I had last month. I will discuss my fatigue and weakness with her then and see if there’s
An alternative treatment option.
I am 70 and still beating this cancer but it is a rough road. I have read on hear even after the last Lupron injection it takes a longtime for testosterone levels to get back up which would elliviate the fatigue and weakness with.
Anyone else with a similar treatment course and similar side effects??
The amount of prednisone you take with Zytiga Can be very important. Some people can get along on 5 mg of prednisone other people have extreme fatigue on that amount. Talk to your doctor about raising your prednisone to 10 mg, This is not unusual many people use this amount
I was in a webinar a couple of months ago and a Doctor who has prostate cancer said that the fatigue was just terrible with 5 mg so he went up to 7 1/2 and it helped a lot for him. I’ve been working with someone who has had terrible fatigue issues, and I told him about Increasing his prednisone. He spoke to his doctor and his doctor said start taking 10 mg, That made a major difference in his fatigue problem, He still has a little bit of fatigue, but not nearly what he had before. His doctor never recommended this. Many doctors just don’t know how to resolve the fatigue.
I was On Zytiga For 2 1/2 years. It kept my PSA down, but caused a number of issues with my heart, including high blood pressure and afib events. Keep an eye on your blood pressure. It could go up more than you expect.
The amount of prednisone you take with Zytiga Can be very important. Some people can get along on 5 mg of prednisone other people have extreme fatigue on that amount. Talk to your doctor about raising your prednisone to 10 mg, This is not unusual many people use this amount
I was in a webinar a couple of months ago and a Doctor who has prostate cancer said that the fatigue was just terrible with 5 mg so he went up to 7 1/2 and it helped a lot for him. I’ve been working with someone who has had terrible fatigue issues, and I told him about Increasing his prednisone. He spoke to his doctor and his doctor said start taking 10 mg, That made a major difference in his fatigue problem, He still has a little bit of fatigue, but not nearly what he had before. His doctor never recommended this. Many doctors just don’t know how to resolve the fatigue.
I was On Zytiga For 2 1/2 years. It kept my PSA down, but caused a number of issues with my heart, including high blood pressure and afib events. Keep an eye on your blood pressure. It could go up more than you expect.
Thanks for your response. After reading a couple comments on here about increasing my prednisone, I asked my oncologist about increasing mine. She said not a good idea as the effects of increasing it could not be good. I see her in January snd I will discuss with her again. Maybe when she sees how exhausted I am just from walking from the parking lot at mayo in phoenix i can get a different opinion from her
Thanks again for the suggestion
You need to tell her that many doctors are already prescribing 10 mg for their people because some people have issues like fatigue that can’t be resolved any other way.
The recommended prednisone dosage for Zytiga is 5 or 10mg.
Thanks for your response. After reading a couple comments on here about increasing my prednisone, I asked my oncologist about increasing mine. She said not a good idea as the effects of increasing it could not be good. I see her in January snd I will discuss with her again. Maybe when she sees how exhausted I am just from walking from the parking lot at mayo in phoenix i can get a different opinion from her
Thanks again for the suggestion
I've been on 10 of the prednisone along with zytiga and monthly dose of Firmagon for 20 months. The fatigue has been bad since the beginning. I'm also 70, all I can do is keep pushing. I do walk a lot slower then I use to. I wish you the best on your journey. Best to all.
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Had radiation worked for awhile. Now tumors in arm and leg.
Nuclear scan showed last chemo killed most in bones CT scan no spread
Since 2020 mets have done Xtandi, Radium 223 and 2 chemo's that put fluid on my lungs so stopped
Waiting to see if Zytiga recommended now 80 fell great Had PSA FLARE Its 181.3 today
Pray Precious Blood of JESUS heal me
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My story of prostate cancer:
I retired in March of 2018. Was diagnosed with pc sometime in July of 2018 and had surgery to remove my prostate. I was a 4+4.
I had psa tests every 3 months and then in late 2019 my psa started rising. I have had all of my diagnoses/treatments at the Mayo Clinic in Arizona. In January of 2020 I started radiation treatments every weekday for 3 months. After this my psa was not detectable. I tested every 6 months and it stayed undetectable until January of 2024. Had mri and pet scan and cancer showed in my prostate region. So more radiation but only for 5 days and in different area than previous treatment. Then was sent to oncologist. I was given my first lupron shot in March of 2020 and also started taking arbiraterone tablets daily. The only side effects I had at this time was hot flashes, bothersome but easy to deal with. 6 months later my psa. Still undetected and had my 2nd Lupron injection on 9/30. A week after this injection I started feeling very fatigued and could not walk more than a 100 yards before my legs became super weak and wobbly. I have started physical therapy for about a month now 3 times a week as I read on this forum it might help. So far it has not and I can barely walk to my car from pt clinic. I feel like only half a man. My family always has to ask before we go somewhere “will you be able to walk that far” ? I always say yes even knowing I will be exhausted the whole time.
I will get my 3rd Lupron injection in March of 2025. I am concerned that my fatigue will even get worse after that. If it does not sure what I will do. (Hopefully not a wheelchair as I do not want to be a real burden on my family)
I see my oncologist in January 2025 to go over a bone density test I had last month. I will discuss my fatigue and weakness with her then and see if there’s
An alternative treatment option.
I am 70 and still beating this cancer but it is a rough road. I have read on hear even after the last Lupron injection it takes a longtime for testosterone levels to get back up which would elliviate the fatigue and weakness with.
Anyone else with a similar treatment course and similar side effects??
-
Like -
Helpful -
Hug
2 ReactionsWhen you’re in your 70s recovering testosterone is very slow. I had robo surgery and a year of ADT at age 74 and starting in December 2021 with aggressive high risk G9 CR PC. After surgery and ADT my PSA dropped and has remained at .01 and my T is 104 and it had been as low as 7. My doctor says that I am completely over the ADT effect but the low T not rising is due to my age (soon to be 78)
I feel ok and happy to be alive with a low PSA and the low T is manageable for me.
The amount of prednisone you take with Zytiga Can be very important. Some people can get along on 5 mg of prednisone other people have extreme fatigue on that amount. Talk to your doctor about raising your prednisone to 10 mg, This is not unusual many people use this amount
I was in a webinar a couple of months ago and a Doctor who has prostate cancer said that the fatigue was just terrible with 5 mg so he went up to 7 1/2 and it helped a lot for him. I’ve been working with someone who has had terrible fatigue issues, and I told him about Increasing his prednisone. He spoke to his doctor and his doctor said start taking 10 mg, That made a major difference in his fatigue problem, He still has a little bit of fatigue, but not nearly what he had before. His doctor never recommended this. Many doctors just don’t know how to resolve the fatigue.
I was On Zytiga For 2 1/2 years. It kept my PSA down, but caused a number of issues with my heart, including high blood pressure and afib events. Keep an eye on your blood pressure. It could go up more than you expect.
Anyone have multiple blood transfusions for low hemo? Suggestions on how to raise it?
Thanks for your response. After reading a couple comments on here about increasing my prednisone, I asked my oncologist about increasing mine. She said not a good idea as the effects of increasing it could not be good. I see her in January snd I will discuss with her again. Maybe when she sees how exhausted I am just from walking from the parking lot at mayo in phoenix i can get a different opinion from her
Thanks again for the suggestion
You need to tell her that many doctors are already prescribing 10 mg for their people because some people have issues like fatigue that can’t be resolved any other way.
The recommended prednisone dosage for Zytiga is 5 or 10mg.
I've been on 10 of the prednisone along with zytiga and monthly dose of Firmagon for 20 months. The fatigue has been bad since the beginning. I'm also 70, all I can do is keep pushing. I do walk a lot slower then I use to. I wish you the best on your journey. Best to all.