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.
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
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).
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.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
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.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
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 
