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Anyone have Prostate Cancer Stage 4 with good results?
Prostate Cancer | Last Active: Dec 22, 2024 | Replies (77)Comment receiving replies
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??
Replies to "My story of prostate cancer: I retired in March of 2018. Was diagnosed with pc sometime..."
I'm 73. I had a similar reaction after my third lupron injection. Walking was difficult, my hips, knees and ankles were really sore.
I ramped up my yoga exercises to almost daily at home and once to twice a week in a studio. Yoga is the best. I also started back in the gym lifting weights. It is helping but you can easily overdo it so the initial startup has to be gradual. I have learned that you have to physically fight the loss of testosterone. Yoga is my main go to remedy.
I was diagnosed with G9 at age 68, right about retirement. Had RP. Six months later I had PSA rise with PET scan showing met at T8. Treated with local (SBRT) radiation. Four months later PSA again rises significantly with another PET scan showing new pelvic node. Went to Johns Hopkins and had triple therapy Lupron for one year, Darolutamide for 3 months, and 4 cycles of Taxotere). PSA went immediately undetectable after second chemo session and has remained so for 2 years.
My last 3 month Lupron shot was July 2023. I experienced all of the usual side effects of low T- fatigue, low libido, loss of muscle, depression etc. My T did not recover (last test was September and T was 52). My JH medical oncologist said I needed to have testosterone replacement therapy (TRT) as I could not continue long term with markedly depressed T. I saw an endocrinologist and was placed on Androgel. I had labs drawn yesterday. T now in high normal range, 845. PSA remains undetectable. My low T side effects are slowly starting to subside.
TRT in men with history of prostate cancer (especially metastatic -oligo-disease) remains highly controversial. But there are known long term deleterious side effects from low T aside from fatigue, depression etc. Some oncologists may be very reluctant to put their patients on TRT as the T may fuel cancer. I have the utmost confidence in my experienced, knowledgeable oncologist at JH. The TRT isn't for everyone.
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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.