Hello Dwautos

I'm sorry to hear about your husband's diagnosis. It's obviously a very worrying time for you both and natural that you will have questions and concerns. 

I wanted to try and put you in touch with another new member Dave-J-H-71  who posted this thread earlier today sharing his story of living with stage 4 prostate cancer since diagnosis two years ago. You'll also see on that thread that a chap called eddiel has replied. Eddie is also living with stage 4 prostate cancer although his story is slightly different from your husband's and Dave's as he has no bony mets. Hopefully, you'll be able to connect with these two gents who can offer some advice and support to you and your husband. 

I also wanted to let you know that we have a team of nurses you can call to talk to for advice, information and support. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

Undoubtedly this is a difficult time but please know we're here to listen and offer any support that we can. Keep in touch and let us know how you get on. 

 Best wishes, 
Jenn
Cancer Chat moderator 

Hi Dwautos and a warm welcome to the forum though so sorry you have to be here and your husband has metastatic prostate cancer MPCa. It's good he has started hormone therapy HT the injection will not only shrink his prostate but hopefully by starving the cancer of it's food, testosterone, that may shrink as well, My stats are similar to yours, diagnosed 2 years ago T4 N2 M1a, Gleason 10 and spread to 9 places. I can't have chemo as it would likely kill me though i have friends with MPCa who had HT followed with chemo and they all started chemotherapy within 12 weeks of being on HT, nearly all having chemo treatment every 3 weeks having between 6 and 10 treatments. bet wishes to you both.

Eddie xx

Hi Dwautos, hope you don’t mind me replying. I had a notification that Moderator Jenn has mentioned my thread I posted earlier today about my prostate cancer journey so far. My experience is very similar to your husband’s. I was diagnosed with stage 4 prostate cancer 2 years ago with a PSA of 53.3 and Gleason 4+5. My cancer has spread to various bones in my hips, pelvis, lower spine, mid spine and chest bone. A great medical team has been formed around me over the last 2 years to support me physically, emotionally and mentally and of course the love and support of my family and friends has been immeasurable. As far as treatment goes, I was started on Firmagon injections as soon as I’d received formal diagnosis, which I still have every 4 weeks, to stop or slow down my body producing Testosterone, Zometa bone infusions every 8 weeks to strengthen my bones and various daily medications including strong pain medication. I started chemo very soon after my diagnosis, I was diagnosed April 2022 and started chemo May 2022 until September 2022, so it shouldn’t be long before your husband hears from his Oncologist with a start date. I found my cancer journey a whirlwind initially, everything happened so fast after my diagnosis and I found it very difficult to process it all, as I’m sure everyone diagnosed with cancer does. To be perfectly honest I’m still processing things as my cancer journey continues. Best wishes to you and your husband. Take care, Dave.

Hi thank you so much for replying.  It has shaken us and been so scared with so much at once.  How are you doing yourself?  I am scared for him I just want him to be here… I’m positive so I encourage him.  He himself dave is doing so well he’s about have second hormone injection to shrink prostate.  On plus side saw orthopaedic doctor two weeks ago who basically told him he was happy to discharge him as his bones at mo all ok.  He’s still working which I want him too.  We still living life as normal as can he’s next no pain at moment which is good.  We in limbo re chemo as wanting book trips away we have a Motorhome.  He has second injection on Monday so will ask the questions.  The urologist said if he reacts well to treatment he could still be here in 10 years which I really hope so.  Like you got lots of support ie family and friends as early days with rest.  We both wish you all the best and hope you not suffering too much.  I’ve had it twice and been very lucky I know yours and Daves isn’t curable but treatable.  Can I ask how often had chemo? And how were you? 
kind regards 

hayley

Thank you for replying am sorry hear you can’t have chemo can you not have radiotherapy?   It’s a lot for you all to deal with and each one got different issues.  We in limbo as not had date for chemo but at moment Dave doing ok he’s not suffering.  We wish you all the best and hope to hear you doing well. 
kind regards

hayley and Dave 

Hi Hayley, I 'm sure chemo  will begin in a couple of months, I can't have chemo or surgery as i have heart problems, though I have had radiotherapy which has helped and I am doing ok, best wishes with your second injection on Monday and happy to hear you both have lots of support, take care.

Eddie xx

Thank you and you take care and keep in touch let us know you ok x

Hi Hayley & Dave,

it’s so much to take in, so much information all at the same time. We came out of my Urologists office after my formal diagnosis with so much paperwork and so many booklets, it took me a while to go through it all because reading about my cancer made it real, if that makes sense. I’ve only very recently started to ask my oncologist and palliative care Dr to see my scan pictures during our appointments, again because seeing my cancer and where it is in my body made it more real. I’m not too bad, thank you. My mobility can be an issue and I use a crutch now when I’m walking. It took a lot of persuasion from my medical team to initially use a crutch, to me I was fine and using a crutch was giving in to cancer. But now I can’t go anywhere without it and I’m so glad my medical team pushed me to use it. I’m not working at the moment, haven’t worked for 2 years & not sure if I’ll go back. Somedays I feel ‘ok’ and other days it’s a struggle to even get dressed. I’ve been told I can’t do any heavy lifting for life because of how the cancer has affected my bone structure. I try to stay positive, but somedays it’s a struggle. I’ve had counselling and recently started another course of counselling. My most recent CT has shown that the cancer has spread to another vertebrae in my spine and my PSA is on the rise again, which is playing on my mind a bit, but I’m trying to push negative thoughts to one side. My life has changed since my cancer diagnosis and I’m still trying to find a new daily routine. It’s good news that Dave’s orthopaedic Dr has said that his bone structure is ok, very positive news. Getting around in your Motorhome sounds lovely, come and go as you please. Have you been given any idea when Dave will start his chemo? I had 6 sessions of chemo, once every 3 weeks. After the first session I felt fine, no side effects at all, but gradually as the sessions continued it really hit me hard, to the point it took my side effects 3 weeks to ease, by which time it was time for my next session, so it was a very difficult and intense few months. But I’ve spoken with other men who had no side effects at all, so Dave could well be fine and ‘sail’ through his treatment no problems at all. Sorry to hear that you’ve been affected twice by cancer, I’m sure that was very difficult for you having to face it on 2 separate occasions and again now with Dave, but very good news that you fought it off twice. As you say, both mine and Dave’s cancer isn’t curable but very treatable and long may this continue.

sorry for such a long reply. 

Best wishes & take care, Dave

I am so sorry to hear it is spreading, Daves psa was 196 when first checked.  No chemo as yet awaiting appointments.  Going away next weekend so hoping after that now.  We just have wait and see re treatment I’m sorry it was awful for you but keep positive I hope you have family and friends around to help you.  Please keep in touch means a lot to know we not alone on this awful journey.

hayley x

Hi thank you so much for taking time to chat.  Sorry not seen post earlier.  Dave had two chemo sessions so far and has to have another 4…his psa level was 296 and now below 127.  He’s had few side effects now struggling breathing really hope not gone into lungs.  He’s got have xray today and cancelled his chemo until next week and see consultant on Tuesday.  I’ve just had total hip replacement so he’s been running around after me I really hope not gone into his lungs.