Advanced prostate cancer .

Hi Billy 

Sorry to hear about your advanced prostate cancer . I have T4 disease and just finished chemo & RT and on Abiraterone tablets with hormone injections. Would like to know your treatment journey since 2016 ? 

Hi I started on hormone therapy, three monthly injection and tablets daily,then chemotherapy for three months, still on injection and tablets, but also on stronger hormone therapy tablets as PSA took a jump up in middle of 2020 latest PSA 0.16.

My injection was decapeptyl , chemo was decapeptyl , hormone tabs medroxyprogesterone  for life and strong ones Enzalutamide .

im feeling ok apart from lacking energy soon start puffing when doing things.

Billy

Thanks Billy for the info . Did you not have radiotherapy? As part of treatment. I was 49 years when diagnosed last year . How old are you can I ask ? I am on Abiraterone which is sort of similar to the enzalutamide you’re on 

Hi mcjc i was diagnosed at 64 , bit mad at dr as should have had a PSA test years before but I didn't know about it.

No good having radiotherapy as so many places to do it, hence chemotherapy . hope things are going well .

Billy

Hi Billy,

My partner has been diagnosed 3 weeks ago with Advanced Prostate cancer and we are reeling. PSA 212, spread to bones, lymph nodes, spine and bladder, Gleason 5+4. Waiting for the results of more CT scans.  He has been started on 3 monthly injections and biclafimide ( spelling might be wrong).  He has taken the tabs for 28 days and the last one is tomorrow.  He has had one injection.  He is so scared and won't read anything about the cancer.  He won't come on this site or ring the nurse  that the team at Guys have given him details of. I am struggling to know how to support him. He is in discomfort and pain but refuses to have 2 ibuprofen - says it masks the pain. I just don't know what to do and am getting frantic. He wants to know if things will get better re:  discomfort as his treatment kicks in and I do not know what to say. I read the comments of people on here and it looks like it will get better but there will be rough days. He has started exercise which is great. Can you or anyone please let me know whatever you think might be helpful cos this is the only place I can go to for info and some comfort at the moment.  

Thanks so much

Hi im not sure what to say if he won't help himself apart from bit of exercise hopefully he'll feel more sure when treatment gets his PSA lower, and what other treatment options have been sorted and started, alot of people I know are sure being positive and fighting back really helps I believe it too .

 Exercise is a good start a fit body can fight better. 

Please keep in touch let us know how things go .

Billy 

Ps probably shouldn't say anything but I've been on cruk for years writing to people.

Hi Simone

What he’s going through all of us have done the same, when is he to start treatment ? It’s normally when his PSA has dropped. The hormone treatment is to bring down his PSA and start attacking the cancer. There are a lot of treatments out there, scans will be forthcoming plus blood tests, listen to what is told you both, ask questions, don’t be shy, their there to help.

Simone there’s going to be plenty of ups and downs with the why me jumping in, like your partner I hate pain killers, I would rather them find the cause and sort it, ( does not always happen ) having said that I do take meds for other unrelated cancer problems, that cannot be helped. 
staying positive is a massive plus, there will be tears only expected, but try to carry on as normally as you can, overseas holidays might be a downer as the insurance for people like us is huge.

Its not all bad it’s early days, so do what comes natural, be together, my wife’s stuck with me through thick and thin, comes to all my appointments, she worries even when I go upstairs in case I have a fall, so worrying is just something we live with.

If ever you need to talk McMillan nurses are brilliant, never feel frightened of talking to them.

Stay safe

Joe

i think Joe hit the nail on the head try to carry on as normal as possible, and my darling wife usto worry if i was out of sight for to long especially when i went shopping on mobility scooter,I can walk but soon out of breath, especially coming home up hill easy going down . 

Just a quick note i was given five years max over six years ago, i think two of my main problems is lacking energy and getting older . Billy 

I call it my univited guest . goes everywhere with me . 

Hi Billy

like you diagnosed at 64 doctors I was with missed it, when I moved new doctors picked it up within a handful of weeks me joining them. PSA was a high one at 893 Gleason 9/10.

When I was told apart from getting the usual hormone treatment, I was given the option of going on a trial called Stampede, it involved 6 sessions of docetaxel followed by twenty sessions of radiotherapy then prostap 3 injections every three months for life.

Been on here for a number of years now coming up to 6 years since diagnosed, I’m no doctor just know what people like us have gone through, plus wives, partners and family. Also I’m no agony aunt, I read what is said and after so many years understand how frightened people are, I’m to easy going example about a month after being on hormone tablets, I woke up one morning could barely breath, all I thought so this is it hmm, wife phoned an ambulance ( I don’t drive ) when they came did some tests and asked why did I phone an ambulance, my reply in gasping breaths never had cancer before.

stay safe

Joe

i had option of stampede trial, but oncologist told me not everyone gets the treatment some get a placebo,(dummy option , and nobody knew what was real or not  so he recommended i have normal chemotherapy and hormone therapy . After chemo my PSA kept dropping over two years with just hormone therapy to 0.03 then slowly rose for two years to 0.8 then jumped to 68 in 6 months so i was started on Enzalutamide ,(what men who want sex change go on) it worked PSA dropped 0.04, but i was struggling to do anything so oncologist dropped dose by % 50  PSA has risen slightly 0.18 in six months so not bad yet but lacking energy puffing and panting like an old Steam Train  . oncologist is thinking of stopping tablets for couple of months to see if energy comes back.

Billy