Hello everyone. I have just found this site, so unfamiliar with posting protocol. Briefly. I was diagnosed with advanced metastatic prostate cancer (bones) in January, 2023 (thought I just needed to stock up on antacids). February, 2023 prescribed Apalutamide plus Trelstar. Ceased being effective April of this year.Recently began being treated with Radium223 (Xofigo) but not sure whether I want to proceed further. I'm told Xofigo may add 2-4 months of life. The restrictions on interacting with friends and family (even if mostly because of their fears) makes the Xofigo questionable, particularly since I was assured it would eventually improve or maintain my quality of life which was excellent with virtually no pain or restrictions of movement/activities. I will be grateful for your thoughts.
My first post concerning APC - Advanced Prostate...
My first post concerning APC
Most of us can't imagine how cancer can deteriorate our QOL. Many think, as you do, that because they feel fine now, that will continue. It won't.
Take two random groups of men. One gets Xofigo, the other gets SOC without Xofigo. The men who get Xofigo (or docetaxel, etc.) not only live longer, their pain and crippling is less. This has been proven.
Glad I found this forum. My urologist estimated my life expectancy at 60 months when starting Apalutamide and Trelstar last year. Now that Apalutamide is no longer effective no one will go near my life expectancy estimate question
Have you asked How to increase effectiveness of apalutamide ? What's he PSA level ? if you planning to do R223 then also do provenge together for best result source:
prostatecancer.news/2021/02...
Thank you for this suggestion. I've been away from my phone/laptop. Will ask about Provenge. Seeing my doctor in 2 weeks.
After 4th treatment of R223 with bone pain, reduced mobility, fatigue and further progression in coccyx treatment has been stopped. After research a PET Scan could have found out success of R223, asked about this at the last appointment “no funding for scan” we should have been told.
What now! HB 83, iron levels good 153, caused by Procitis since Radiotherapy in 2019, had Endscopy/colonoscopy not bowel cancer, Barrett’s disease of oesophagus, review in 5 years, (my husband told 5hem he would be dead by then. been waiting for appointment over 12 months for treatment of Procitis, will opt for private self paying, but who to go to, live in Shrewsbury Shropshire and don’t want to have to travel to London. GP referred for blood transfusion this Wednesday, hopefully will address short term, but need treatment for the daily bleeding/mucous , bowel frequency ‘Procitis’ which affects QOL, not only physical health, but also mental health. As a wife I feel helpless.
Have you looked into care at Southampton's General Hospital. It's a teaching hospital and has a nuclear treatment unit. I believe it offers both private and NHS options for treatment. My dad is being treated there. He was meant to start R223 in May, but sadly broke his leg, has been bedbound, unable to continue treatment and now seems to be giving up, which is depressing.
But SGH is one of best hospitals in UK IMO. I had brain surgery to remove a brain tumour there in 2016. One of only a handful of hosptials in UK to offer brain surgery.
All I can say is follow the advice from Tall_Allen. This gentleman knows more about PCa than most doctors!! Plus he’s empathetic and a nice guy! Best of luck to you!
I heard 3 to 5 years from 3 oncologists, 4 years ago. No one can accurately predict your life expectancy. You make the best, medically and scientifically based decision, to give yourself the longest and best possible quality of life. Worrying and fretting will get you nowhere.
FWIW, my results aren't typical, but 4 years after the diagnosis I am doing very well with manageable side effects. No tumors visible on scans for two years. Treatment continues.
Thank you StevetheJ. Glad to read of your success extending survival. Don't know how typical my response/reaction is, but I haven't worried about or feared my reality at all. At least not until the Apalutamide/Trelstar combo ceased keeping things under control with PSA steady at 0.60. Then suddenly 1.69 and a month later 3.13. I am a results oriented competitive individual, but the novelty is I cannot see what is happening and respond accordingly. Must rely on tests and judgment calls by MD's, who, please understand, I am glad to have. Learning quickly in this forum and I thank you all.
Do read my posts and my husband bio, R223 has given poor QOL. Offered R223 or chemo my husband thinks he made the wrong choice had little bone pain before R223
Approved for Xofigo
Back to plan B - No longer chasing Lu177
New developments, Xofigo, Xgeva
My first Post. Guidance needed please.
Positive APC Treatment
