I just want to chat metastatic prostate carcinoma.

A very warm welcome Spannerash.

I think we can all understand what you are going through being bombarded with a lot of information but not knowing what is relevant to you and what do you have to do with it. It is not the same as being able to talk to someone who has been there, done that and worn the T-shirt. This is OUR Community who make it what it is, hopefully a friendly and supportive bunch of people who get what you are going through.

It sounds as if you are on your way with treatment which is good. Let us know how it is going and of course comes back and ask any questions no matter how small or silly you might think them because we have all done it. If you want to you could add some information onto your profile page which will help if you want more targeted information in the future as people will know where you are on your journey.

My husband is also on the advanced prostate cancer journey, being T4, Gleason 9, Grade Group 5. Our world fell in when we were given that diagnosis but here we are 41 months on and still going strong. I won't deny that it is a rollercoaster of a journey but there is an ever increasing range of treatments available which means that the prognosis is improving all the time. Our oncologist told us that he could do 50%, the other 50% was down to us in terms of having a positive attitude and with lifestyle changes such as diet and exercise so if you want any help or suggestions then just ask.

I am sure that now you have started the ball rolling others will be along to say hi.

I wish you all the best over the festive season but come back at any time if you just want to talk.

Hi,

Is there anyone out there that has advanced prostate cancer and completed .

I would like a chat .

Weeks, months, years post treatment matters not.

I've started hormone, chemo and single sessions of radio and want to attempt a reasoned assessment of ' whats next'.

Hi Spannerash.

As a follow on from my previous post, can I help or would you prefer to have a man to man chat. My husband is over 3 years post T4 diagnosis and has been through secondary generation antiandrogen treatment, radiotherapy and chemotherapy and we have already had discussions with our oncologist as to what is next. Can I also suggest that the Macmillan team are also on hand and very knowledgeable. Also Maggie's group can offer face to face help if you have one in your area.

Hi,

Thank you for the contact. What happened after chemo?

I feel like the life has been sucked out of me and gone from very physically active to struggling climbing stairs. 

How quickly did the debilitating chemo effects wear off after the final session?

How close % wise to pre diagnosis / treatment lifestyle and ability are you now?

What I forgot to say is that everyone's journey is different. Some people respond well to the hormone therapy for several years, other like my husband had to change after 18months as the cancer became resistant to it, this happened again after the next drug started to become less effective so yes for us it is a rollercoaster journey. Throughout it all the priority is on quality of life so a balancing act of coping with side effects and still enjoying life, albeit in a different way to before diagnosis.

I have just caught your response from the other thread so have brought it over here.

My husband completed his chemotherapy in October. Yes he was also washed out for the duration but if you are really struggling make sure that the team know about it because they can adjust things to help you through. It took my husband about 3 weeks after the end of treatment to start feeling human again but must say that he is now feeling better than he has felt in a long time.

Hi,

I'm not sure how this forum works. My first time on any social media. 

I  replied ( I think) to your initial contact.

At the moment anyone will do!

'The other half' usually has a more objective outlook so thank you viewpoint.

Honest answer on your other question about life before and after, it is different mainly due to the effects of the hormone therapy but can I stress again that there are things to help. Fatigue is the main thing to battle so try and keep as fit as possible. If you don't want man boobs then speak to your doctor soon as there are drugs to help. If you start to get hot flushes then try sage tablets or tea, failing that then back to the doctor. Mood swings are pretty common to most on hormone therapy - don't suffer in silence. Weight gain round the middle needs to be kept in check. Have you had any dietary guidance as there are some tweaks which might help. ED and loss of libido are important to some people but not others.

Basically come back and ask and the lovely people here will try and help.

Thank you. your perspective is ideal.

How did you know that hormone therapy wasn't working? 

This is one of my many fears.

How did you adapt to a change of life style?

I have gone from being very active  to using a walking stick. I don't know when to stop. My wife is struggling with the whole thing.

Hi Spannerash,

Welcome to our club and sorry you have had to join.  Alwayshope has said most of what I would have said (and much more eloquently!)

I would just say that we are all different from the diagnosis to the treatment and in the way we react to those treatments, but across this site I bet we have experience of all of it somewhere.  My personal journey started over 6 years ago and I also wish I had known about this site when going through chemo and RT.  The journey is a rollercoaster but keeping positive (which isn’t always easy) is a big part of it.  Feel free to ask any questions.  

Best wishes.  David