Metastatic prostate cancer
Looking to connect with men whose cancer has metastasized, specifically in bone lesions. And are on hormone therapy for life. I'm 3 months into lupron/abiraterone(zytiga) and prednisone. Overall health and quality of life. Effectiveness of therapy. Etc.
Hi
. You said you are three months into hormone therapy - how are you doing so far?
Also, if you don't mind me asking, have you had any other treatments for prostate cancer before starting Zytiga and Prednisone?
Talk soon,
Amylyn (Community manager)
Hi there, I'm one of the moderators and authors on this site. I was diagnosed with stage 4 metastatic PCa in May 2017 with bone mets in pretty much every bone from pelvis to skull. My PSA was 129, Gleason 5+4 and a worst case prognosis of 2 years. The only treatments I've had to date are Prostap, Abiraterone and Prednisolone. My PSA hasn't been recordable for over 3 years and I've just completed a year of running or hiking everyday. If you need any help or guidance please do ask away. jut read your post and it’s given me a glimmer of hope. I just posted our story in the advanced prostate cancer forum. I’m just looking for some hope for us. Thank you. this is so encouraging to read. My husband at 60 was diagnosed a year ago with aggressive and bone Mets in pelvis and hip but his PSA never went over 7. He is on triplet therapy, had chemo, and now doing radiation to prostate. I just love hearing stories liken yours. I just love him so much
Hi
,
7 months of Lupron. Sitting tonight with a Lupron hangover which I usually get the day after the shot (which was yesterday). Brain fog, fatigue, etc. This should clear up, it always does, but for me, the first day after my shot is like this. In general I have been feeling good, certainly so much better than the beginning. Was discovered in October 2020, had metastasized to hip bones, groin lymph node. Right leg was suffering some serious edema and I was basically bedridden in November, moved to crutches and cane in December, and was able to walk and drive again by January.
Still dealing with the idea of this being a forever treatment, and I won't be one of those lucky "finally cancer free" folks. The horse has left the stable as they say, so I am dealing with the idea of Lupron, fatigue and brain fog as part of life now. Hopefully the treatment will contain it for some time, before I need to move on to radiation or other therapy.
Quality of life was not great last year 😉 but right now is 90% of normal for me. Hoping to maintain that.
T5 years on lupron injections and Erleada. PSA has moved into areas of soft tissue, detected by a pet scan with clarity. Doctor decided on a treatment called provenge. It consisted on three treatments spaced two weeks apart. My follow up pet scan showed that the provenge hadn't helped matter. Soft tissue is still being affected. I'm currently taking oral chemotherapy and lupron injections. I have a two week follow up to see progress if any. Meanwhile I have zero side effects and I'm still able walk two miles a day and do free weights and exercise two hours a day. 
My side effects of Lupron shot every 3 months along with Abiraterone Acetate ( 4 tablets nightly) and Prednisone 1 tablet morning. Have been on all this since February 2023. Was diagnosed with prostrate cancer 1 week before my 60th Birthday Sept 2022, planned on removal of prostrate but my Oncologist requested a PET scan I. January 2023. 1 week before surgery was to happen. Found cancer spread to spine T-1 location. Surgery stopped immediately. Radiation was then scheduled to start in April with 44 treatments BUT insurance called 1 week before and said Dr at insurance found that amount of treatment unnecessary. I was pissed off how dare insurance play with my life. Radiologist agreed to 20 treatments. Took off from work 9 weeks was not going through that and work.
Radiation ended in mid May, Dr wanted to wait 1 month incase of side-effects. Fatigue was mostly what I got besides the already side-effects from hormonal therapy. Then met with bone Radiologist and scheduled 5 days of intense radiation. Requested short term disability from work. Before treatment started got a 9mm kidney stone in left kidney, week later a 4mm stone in right kidney. I kept asking who had a voodoo doll of me? Treatments started for stones, once done then radiation started for bone cancer. 1 hell of a roller-coaster ride. Radiation went well, PSA - 0.02 Testosterone - 0.03. Oncologist said hormal treatment 2-3 years.
Symptom issues: anxiety, depressions, memory fog, fatigue, loss of appetite, sleeplessness, severe emotions ( breakdowns at least 2 weekly). Put in for now long term disability insurance at work. I couldn't contend with work stress at this point in time.
Hi
. I can't personally speak to stage IV PCa, but I want to share with you Xofigo: It mimics the calcium in the bones where the cancer attacks and emits alpha particles that kill the cancer. Because it gets so close to the cancer and only emits the particles a very short distance. peripheral damage is limited. Your doctor should be able to provide additional information, although, as the article discusses, many doctors are not aware of the full range of its benefits, so don't hesitate to ask directly what they know about it. Best, Richard (ProstateCancer.net Team)
