Being taken off Radium223 - what next?

Hi Stew, read your blogs we are amazed how you’ve cope with everything, and kept on fighting never giving up.

Look at my husband’s bio diagnosed in 2008, had all standard treatment, latterly had 6 treatment's of Lutetium, privately and 4 treatments of R223, now stopped.

Regret having R223 got a lot of back pain presume from progression in coccyx while having treatment R223 and mobility has deteriorated; Hospital MDT stopped treatment and referred back to local oncologist 

What we have since found out that a PET SCAN could identify who would not respond to R223, asked the Oncologist about this and said no funding for PET Scans. Darolutimide not available either although used regularly in US with good results.

Local Oncologist can only offer cabazitaxel or single fraction RT. On our request made a referral to The Christie Hospital Manchester, hopefully they can offer further treatment to give more time. 

Not sure about further Radiation as since radiotherapy in 2019 had chronic Proctitis, found out after treatment that you can have shield to protect the bowel but this is not funded by NHS.

Questioned why when complaining about Proctitis symptoms there is not a system to refer to a colorectal team for treatment straight away.

Just started sucralfate enemas, but only after complaining to PALS,  frequency/urgency and most days rectal bleeding for 5 years. Recently had blood transfusion + iron as low Hb 80. Will possibly need to have further transfusions because of bleeding.

Asked Oncologist to refer to someone for pain management and a HomeCare nurse from the Hospice has visited twice and give advice, liaise with GP to prescribe Butec 5 morphine weekly patches + liquid Oramorph for top up break through pain and can still take paracetamol; medication is gradually giving pain relief. Also increased Dexamethasone from 0.500 msg to 4 mg x 2 weeks and then to gradually reduce. This immediately gave a mental & physical lift.

It appears if you don’t ask for investigations and treatments you don’t get, in the beginning Tony was lucky to get on two trials and received exceptional care and treatment 2008 - 2018.

It appears local Oncologist hands are tied because of lack funding for expensive investigations and treatments.

Best wishes from Jan & Tony

Referred back to QA Hospital Portsmouth from Southampton Nuclear. Appointment rescheduled for 23rd August, we'll see what bright ideas they come up with.

Blood transfusion (2 units) to improve my blood levels has been a godsend, I feel so much better as a result. Pain flares seem to have faded away, but the basic bone cancer pains still there in lower back and spine. 30/500 co-codamol and the odd slurp of oramorph are doing fine at the moment.

I'm resigned to the terminal nature of how my prostate cancer has progressed now, but still looking for the shiny new magic cure that can take me into extra time, and if needed, penalties!

Hi Stew

Is cabazitaxel an option?

Regards Phil 

Hi Stew have posted you already regarding your blogs and health journeys & your personal battle with Prostate Cancer. My husband has had 4 treatments of R223 now in a lot of pain and mobility deteriorated , having Morphine patches and Oramorph, had little pain before R223. Like you he also recently had a Blood transfusion + iron. Hope your appointment at Southampton is positive, will be thinking of you, best wishes from us both Jan & Tony