Hi Jellies 

Really good hearing from you Rory. Reaching a major treatment milestone finishing radiotherapy is good to hear, although the fatigue has been arduous for you. I found the same as you know. 

Undetectable PSA is a dream for those of us who haven't parted company with our prostate glands. My latest reading was 0.09, which is good I think. 

My big thing, having fully recovered physically, is to get back into shape. I've piled on the weight. Desperate to fit into my usual wardrobe not clothes. 

I've recently reduced my workload by resigning from two of my companies boards and working through disposal of shares now. It's a painful and stressful process but I feel necessary. I've two remaining very active roles and I am in the process of preparing one for an exit in 2025. 

Good luck with the gym! Let's both get back to it :)

Take care and thanks for reaching out.

Matthew

Hi @Jellies and everyone!

It's great to hear from you my friend, thanks for thinking about me and everyone. It means a great deal. We're part of an exclusive club after all. Ha. And yes, I was thinking recently we are heading towards our second anniversary. Blimey. 

Sounds like we're in the same boat reference tiredness etc and the intimate realm I am trying to figure things out. Labido is virtually gone but I have luckily avoided full ED and just about get things moving in the right direction. Trouble is I'm scared "stiff" of failing so been avoiding relations.  I need to get on with it if only for the sake of my long-suffering wonderful wife.  

As for getting fit. Big fat fail. I absolutely must do better in January. My last PSA test results from last week remain low. Good for another 3 months. 

Your friendship, advice and good humour has been really important so thanks again for being in hand and within reach. 

Have a great time in the snow creating memories. 2024 is going to be great!

Very best,

M

Hello Jellies and everyone,

Thought it was about time to reach out and update one another with the happenings so far in 2024. I do hope you are well and that your vacation was full of new and lasting memories. I can't ski for the life of me but would have loved to have learned. Ill fitting skis and zero coaching in Dubai of all places, put pay to my interest levels, ha.

Samantha and I flew out to Florida for the New Year to spend time with our middle daughter and her new husband, and their cute puppy. We had a great time. I hired a massive American truck which I absolutely loved. I simply didn't care that best Mpg I achieved was 12! This is very unlike me (I drive a Tesla Model S and Samantha has a BMW i3). Gamekeeper turned poacher.

Health-wise I am thankfully doing really well all things considered. PSA has been at or around 0.06 for a year and the last MRI scan results showed no evidence of disease. Fantastic. I wrote to my Oncologist a year or so ago suggesting he takes a long hard look at Intermittent ADT strategies being trialed in the USA but at that time he felt that my dependancy on ADT injections was lifelong. Anyway, at my last appointment (marking the 2 year anniversary of my diagnosis) he recommended we adopt the intermittent approach! The trial results in the USA were compelling and showed there are statistically no down-sides clinically. Music to my ears.

The key benefits fall into two categories - 1) quality of life, i.e. the after effects of ADT therapies such as fatigue, brain fog, loss of libido etc and 2) Perpetuating castrate sensitivity, in that, stopping and starting ADT drugs can keep the cancer cells guessing, theoretically making it less likely to figure out a work-around resulting in castrate insensitivity. So the plan is to not take my next planned Zoladex in-plant in May, then increase my PSA testing to bi-monthly tests and wait until the PSA levels rise to 4, at which time we start ADT again to bring the PSA under control. We repeat this cycle for as long as possible. Trial data suggest that a fasting period might last as long as 18 months before triggering ADT intervention. I am convinced this makes a lot of sense so I am hopeful my energy levels and libido return quickly and magnificently!

On the home front, our new home is still under construction and behind schedule, mainly due to very wet weather. That said, it is coming along nicely with roofing nearly complete and windows due, so we will be water tight this month. We haven't an agreed move in date but we hope it will be by September at the latest. Exciting times for us as a family. Samantha stresses about the future, understandably, we both do. But this is an important step for her especially to feel nested and safe. We live temporarily in a lovely Barn Conversion in North Yorkshire, so we are hardly slumming it, but are more than ready to get on with the next chapter of our lives close to family and good friends.

Work wise I am back to almost full throttle with increased international travel and working across time zones, which can be challenging. My goal is to prepare for a full exit within the next 2 and a half years. My board thinks it's doable with a a concerted effort and a following wind of good fortune. My biggest worry is not death so much, more so leaving my wife and kids with lesser than planned financial security. Anyway, so far so good. I am feeling positive.

Look forward to hearing how you and yours are doing...

Take care, 

Matthew

Hey Matthew2022 

Great to hear from you.  And it's a really nice post and one that should give hope to anyone who is newly diagnosed.  Life goes on, even after the bad news of a few years ago now.

As I type this I'm waiting at the airport for a 4th week skiing this winter.  Feel very fortunate to have bought our place all those year ago.  We also moved house and will be doing some renovations over the summer.  Also just bought a model Y which we really like.  Also have tickets booked for the Euro rugby finals in London so hopefully Leinster make it.  Life goes on!

My energy has really improved since Christmas and now back working at full pace.  Although my fitness regime now consists of dog walking instead of Ironman triathlons.  Hoping to get back sailing over the summer.  I just find I can't do too much or I hit the red zone and it whacks me for a few days.

My onco says we will do ADT for 3 years until August 2026.  That's an injection every 3 months and Erleada tablet every day. Then I will come off and we will see what happens.  PSA is undetectable ( <0.03) but who knows if the little *** is still there lurking in the background waiting for an opportunity or not.  I'm in good form but would love a bit of testosterone to boost energy levels a bit.  Will love to hear how you get on with the intermittent ADT.  Sounds like a good approach to balance treatment and QoL.

Best wishes to everyone out there.

Rory

Hi Jellies and everyone out there,

I've been meaning to update you on progress here and hope this message finds you very well?

The intermittent ADT is so far holding strong. My last Zoladex implant was 27 March this year and the old PSA score stands at 0.05 which is where it has been for a while now. Not bad for a bloke with an intact prostate. Oddly, my testosterone remains really low and appears not to want to rebound....which I guess is good in terms of not feeding the creature but it doesn't help with QOL "issues."

Otherwise, still haven't moved in to our new house but it is getting there. Move date is now mid January (we hope). I am working at a good and consistent pace and have even managed to be pulled into angel investments with two start-ups. I wouldn't have imagined ever being able to even contemplate such additional burdens never mind do them a year ago.

My wife understandably worries about the future, fuelled by the uncertainty of our condition. I am Mr Positive ordinarily so I have to be extra careful not to appear dismissive or overly confident. It's a blessing to have a very happy marriage and supportive family around me and us all.

Look forward to hearing from you,

Matthew

Hi Matthew2022 and anyone else reading this

So I just started my last year (hopefully) of ADT treatment.  I will finish Erleada in March and the last Decapeptyl injection in July.  At least that is the plan.

To be honest I have found this year very hard going.  Very fatigued due to the ADT and I think the cumulative effect caught up with me.  Something else I really struggled with over the summer was losing a lot of things I enjoyed and various friend groups.  For example, sailing, sea swimming, triathlons.  I just didn't have the energy for any of that and also I missed the social aspects.  Also with work I've gone from a top performer to just about hanging in there.  So when you combine everything I was pretty down over the summer and have had to reset my expectations.  Net result is that I've taken up playing golf and find it has at least given me something to do instead of focusing on the things I used to enjoy.  And with work I've just had to let promotions pass me by and just get through each day as it comes.  

On the medical side I did a routine CT scan and a bone scan last month and both were clear.  However I am getting a probe tomorrow to scan my bladder after a lot of bleeding.  Apparently this can be due to radiation cystitis.  There is talk about doing 20 or 30 hypobaric sessions to promote healing in this area so I will have to see what the consultant recommends.  I'm still on Decapeptyl and Erleada with undetectable PSA and at this stage I'm determined to complete the treatment regime and see what happens after that.

It is great to hear from you.  Hope the house move goes well.  We are busy planning some upgrade works to our new place.  But my daughter does her Leaving Cert in June so we will wait until after that to start work.  

Best wishes to everyone

Rory