New here: Advanced prostate cancer complicated by heart failure

Hello Jenny (Jenny28) 

A warm welcome to our little part of the Macmillan Online cancer Community. I am so sorry to find you here and hope you will find it a source of both friendship and help. I am sorry to read of both your mother's and husband's circumstances and I send you my sincere condolences regarding your mother.

My honest opinion is that Advanced Prostate Cancer with a spread such as your husbands, and a Gleason 9 is treatable but not curable. Having said that we have Community members with a similar diagnosis who are over 10 years into their personal journey on the Community.

The treatment your husband is on is as you say

Jenny28 said:

The hormone treatment together with Enzalutamide and on top of heart medication feels pretty brutal but necessary

However he's on the right track by keeping as fit as possible as fatigue is his main enemy now. Most of the other side effects can be tolerated (I take sage tablets and my hot sweats are history).

Jenny28 said:

I'm not sure what I'm hoping for here but it often feels like a lonely journey

Prostate cancer is a lonely journey and it's also a couples journey and it's great you are there to support him. We as a Community can support you both - you can come on here anytime for a chat - ask questions etc - we aren't a bad bunch. 

I hope the above helps, remember it's OUR Community and YOU are a member.

Best wishes - Brian.

Hi Brian,

Thank you for your lovely warm welcome and kind words about the loss of my mum. So much appreciated.

Thank you too for responses to some of the specific points I made. I’ve just bought some sage tablets for my husband in the hope that they might help. 

You too have been through the mill and I’m glad you’ve found this site a source of support and friendship.

Thank you so much 

Hello Jenny (Jenny28) 

Thank you for your reply. I have found my personal journey has been made easier bu joining this Community - and yes, like everyone when I went through a bad patch the guys and girls on here were there for me.

My hot sweats were bad - I took a towel to bed at one point but the Sage Tablets worked for me (they don't for everyone) and they stopped after about a week.

You should also check your husband has been prescribed Calcium and Vitamin D tablets as the Hormone Therapy can lead to thinning of the bone structure.

Best wishes - Brian.

Hi Jenny28.

Good afternoon and welcome it's great to meet you today sorry that it's under these circumstances!!! 

I am very sorry to hear about both your husband's PC and your mother passing away which must have been very very difficult to deal with my heart goes out to you.

My original PSA last June 2023 was 1000+ and there was cancer mets in all of my bones. I was put straight onto HT which has now brought it down to single figures which is great news.

Mind you it had started to go in the wrong direction recently so following more tests I found that the cancer was in all of my pelvis causing tremendous pain.

Yes I have had a Stroke previously at the age of 32 so they always say "Lightning strikes Twice" that's for sure!!!! 

Prostate Worrier.

Oh I’m so sorry - you are handling such a lot. Thank you for your lovely kind response. I don’t know how long ago was your stroke but that seems very young. … 

I'm sorry too about your extreme pain and really hope you have some pain relief to help with that. 
My husband’s PSA was only 20 at the start and the doctors were puzzled at the extent of metastasising. The consultant told us he thought that my husband’s cancer was recent and  fast growing. I started with little knowledge about all of this but you build up a lot of knowledge in a very short time when these critical life events happen. 
Sending you warm thoughts and prayers as you navigate this path, especially your recent news  

Hi Jenny28.

Many thanks for your reply yes my Stroke happened in 1998 on the first day of a family holiday.

Yes the pain seems to have subsided since the RT which is great news.

I'm currently like many on here on a curative pathway so hopefully long may this last.

Yes please please ask any questions that I may be able to help/support you with & I wish you both all of my best.

Prostate Worrier.

Hi Jenny28 sorry you have joined our club but welcome.  None of us are the same in our diagnosis, treatment and response but there are lots of shared issues and it is reassuring to know that we are not alone in our journeys.  Having said that, your OH seems to be doing really well (and long may that continue)!  I don’t know your OH’s exact diagnosis, but with a treatable (not curable) outcome, the journey is a bit of a rollercoaster.  Make the most of the highs would be my advice and after 7 years with PC that is what we try and do.  My oncologist is still hopeful that she has more tools in her toolbox.  Obviously none of us know what the future holds but try and remain positive as that seems to go a long way to fight this awful disease.  I am confident that the amazing people on this forum will be able to help you as you go forward, so please don’t hesitate to ask.  Best wishes, David.

Hello Jenny28 and welcome to the family. My husband is further along with advanced prostate cancer, although he doesn't have bone mets. After 4 years on the journey we have learnt that there is no right or wrong treatment pathway but the experts will keep offering things if they think you can tolerate it plus you have to make sure that they know your attitude towards the disease and help yourself as much as possible with lifestyle choices. The other thing we have discovered is that different types of prostate cancer respond better to different treatments so the experts are vague as to outcomes. Even though my husband has been through EBRT (33 sessions), ADT (for life), Enzalutamide (for 18months), chemotherapy (6 cycles ) and recently SBRT (5 sessions ) we are reassured that there are still more tools in the toolbox for further down the line. One thing that is being checked at the moment is a genetic screening which should tell us whether certain treatments are likely to work so maybe something you could ask your team about? Your husband will remain on the Enzalutamide for as long as it continues working - with my husband it was 18 months but I am aware of it working for a lot longer with other men. It is a rollercoaster but at the moment things are going very well so we are enjoying every day as it comes and making the most of it - a positive attitude is so important.

Loneliness is common until you realise that many people feel like you and are able to share their thoughts and fears with others. There are groups around which can help but also places like Maggie's. As a group we are always here to help but also we can go off piste on occasion and have a good laugh in the meantime which you can feel free to join in.

Please come back with any questions or if you just want to vent.

Thank you for the advice Brian. Very helpful.

Thank you so much David. That's very reassuring. The first words we heard when the results were provided back in April - bit by bit (an additional bone or organ were added each week) as though the doctors felt they had to let us down gently - were non-curative, palliative and aggressive. We have been told that neither chemotherapy or surgery are options - which is to do with the condition of the heart. Our oncologist has said that there are one or two other things in the toolkit should the Enzalutamide stop working.

Just this weekend we headed off to the Cairngorms in Scotland. My husband, bless him, managed to walk very slowly up and down two mountains (not far off in height from the highest in the UK) and a fair number of miles. He loves the hills (although I suspect yesterday was the last time for walking them as it was such a trial for him) and he still tries to run/jog most days. A good routine is important for him. We try to say as positive as possible.

Thanks and best wishes winging their way to you too.