New here: Advanced prostate cancer complicated by heart failure

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Hi all,

I haven't felt up to joining a Forum because this year has been so challenging and right now I'm just going to pour out some thoughts. Thank you in advance for any support.

Back in April my 64 year old husband, after a PSA of 20, was diagnosed with advanced prostate cancer and a Gleason score of 9 . The cancer had already spread to hip, pelvis, femur, liver and lymph nodes. This is on top of heart failure diagnosed last year. In the same month my mother living 500 miles away was diagnosed with stage 5 kidney disease and has since passed away. I have been pulled in two different directions trying to support two people I love.

I've just posted on another part of the Forum about my husband's experience with Enzalutamide and Degaralix. Reflecting on this it might sound a bit triumphalist - I hope it doesn't - it's just that we have to hang on to every shred of positive stuff, knowing what we know and what we don't know. We know his heart condition is serious and our GP said that most with his level of heart disease would struggle to walk from the car to the house, never mind having cancer too. I did say that my husband continues to go jogging a few miles every day. As a former marathon runner it's his way of continuing to feel alive.

Whilst we are grateful to the NHS for quick diagnosis and start of treatment back in May but the consultants have been suitably vague about what to expect. As long as the PSA level keeps reducing or is stable, that's the only feedback we have had so far and that seems to be the way they intend monitoring progress.

The hormone treatment together with Enzalutamide and on top of heart medication feels pretty brutal but necessary. The main problem is night sweats and sleepless nights. In two months I guess there have been a handful of nights when he feels he has slept more than 3 hours.

I'm not sure what I'm hoping for here but it often feels like a lonely journey and one with an end that neither of us wants to contemplate.

Thank you for reading this far and sending warm thoughts to all who are struggling out there.

Jenny28 over 1 year ago in reply to Alwayshope

Thank you for your welcome and for sharing Alwayshope. We were made aware back in April that the treatment is non-curative and that Enzalutamide would be used until it stopped working and that all treatment is for life - which is effectively the 4 weekly injections of degaralix. Chemotherapy is ruled out as is surgery.

We asked about other options but the oncologist has been vague. He did say they had one or two other 'tricks up their sleeve' if the Enzalutamide stopped working. The dose has been reduced from 160mg to 120mg daily - to try and improve sleep and we will need to see whether the PSA rises as a result.

We popped into Maggies to begin with, and the person who spoke with us was very compassionate, but my husband doesn't wish to join a group and the family/supporters group didn't seem to be functioning at the time. We only found out about the heart failure last year and so this new diagnosis coming so swiftly after has been difficult to get our joint heads around. However we remain as positive as possible. We are slowly building up confidence to go away and do things which we might not have considered feasible, on the basis that you don't know until you try.

Sending love and best wishes

David2017 over 1 year ago in reply to Jenny28

Jenny28 that’s an amazing achievement for your OH. That will have done him the world of good and hopefully it won’t be the last time - never say never! He must have lots of determination and with your positive attitude that goes a long way. Some of the words just stick in your mind and I remember leaving the oncologist with ‘palliative’ ringing in our ears. After 7 years, my oncologist said on Friday when delivering bad news, that I should make 80 before she opts for chemo. I was convinced at the start I wouldn’t make 69! Good luck, David

Best wishes, David

Please remember that I am not medically trained and the above are my personal views.

Jenny28 over 1 year ago in reply to David2017

Oh that’s so good to hear David. That’s a wonderfully reassuring response. Thank you

Hugs

Alwayshope over 1 year ago in reply to Jenny28

Your husband did well with the walks and I hope it has given you the confidence to try something else. We have just come back from 4 days away and had a wonderful time being very lazy and pampered so this has given us the desire to do it again. Keep positive and trust that there are more tools in the toolbox if necessary but enjoy the time you have together.

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