Hi! I'm actually a therapy radiographer so I treat patients with radiotherapy. In my personal experience, PSA can vary greatly and it isn't a reliable indicator of prostate cancer stage or aggression. Some patients I've treated have had PSA over 100 but been early stage and treated well. I'm afraid until a biopsy and scans takes place, it isn't possible to get a good idea of what exactly is happening. Many patients find their PSA drops dramatically after starting hormone therapy, but your consultant would be able to discuss this with you in greater detail.

Wishing you all the best! 

Mathew,

Also sorry to hear about your results. You can battle through it with support and take each step at a time, it's a huge shock for you and family but there is support out there. One thing i've found is that i've not tried to hide it from anyone (work colleagues , friends etc) and without exception all have been sympatheyic and supportive - it feels like some of the load is shared.That may not be for everyone but however you handle it i wish you well,

Simon

Hi [@Matthew2022]‍ 

Just a quick update on my treatment.

Friday a week ago I came down with a chill.  I think it was from being out on my bike in the cold weather even though I was well wrapped up.  My temp was 40C so I called the cancer line and they suggested it was viral and to take ibuprofen and paracetamol.  To be honest I assumed I would shake it off but I just couldn't, obviously because my immune system was still down after completing chemo.  Anyway by Sunday I still had high temps so they admitted me to hospital and I finally got out on Thursday after being on IV antibiotics.  I'm out now and feeling good but tired and just on oral antibiotics.

My RT started last week while in hospital so I have completed four sessions.  No impact so far.

For the second line HT I am on Apalutimide (Erleada).  You have to take four tablets at the same time each day. The treatment is based on the results of the TITAN trial for metastatic castrate sensitive PC.  Because of the infection I will start these on Monday when I've recovered a bit more.  The nurse said that I will have monthly monitoring and various supplements for bone health.  She also mentioned a monthly infusion but not sure what that's for.

That's the update.  Hope everyone keeping well.

Rory

PS

Here are some details on the TITAN trial....

The results of the TITAN trial were surprising and very much welcome. The results were surprising in that apalutamide was not only able to delay disease progression, but also to significantly improve overall survival in men with the whole spectrum of metastatic castration-sensitive prostate cancer. Also surprising was how quickly this difference in overall survival was demonstrated. It is important to note that patients were well managed, and sequential therapy was appropriately used. The results strongly suggest that early aggressive therapy in all patients with metastatic castration--sensitive prostate cancer is more effective than sequential treatment. With a median time to castration-resistant prostate cancer in the patient with metastatic disease of only 1 year, the added burden of treatment to the patient, as well as to the health-care system, appears well worth the cost.

Another revealing aspect of the TITAN trial is the survival benefit appeared to be at least as good in patients with low-volume disease as in those with high-volume disease, and regardless of whether the patient was newly diagnosed or had disease progression from a localized to a metastatic state.

Hi [@Jellies]‍ and everyone,

I had planned to throw out there an update of my own this weekend, thanks for being on the same wavelength. 

5 days in hospital is no fun and having to start RT while in residence too. Not good. Still, you get brownie points for actually being on your bike in the first place. You have been taking your exercise seriously which is amazing. I'm struggling to get motivated. Must do better . I much appreciate hearing about ill health after recovery (less stressful), really pleased you're feeling almost back to normal. 

Let's hope you continue to have a smooth experience with the zapping process. Are you managing to master the fluid retention balancing act okay? My nurses almost gave me a certificate of excellence for my bladder skills. I was the envy of many of the terrific lads in the queue. A wee folk hero! 

The Titan trial results are fab, thanks for sharing those. I will add that to the other treatment options discussion with my oncologist. It seems to me the sequential treatment approach that I and many men are following needs to move on. I'll let you know what happens. Hopefully I will see the med team soon for my latest MRI results. I will dive into the discussion then. 

My only noteworthy update is I have started taking Provera x2 10mg tablets to combat hot sweats. They are doing the trick really well. I'm guessing a 90% reduction! Unfortunately that comes at a price, worthwhile in my view, of fatigue or extreme tiredness most days. I have a brief nap and I'm good to go. I'm hoping that will lessen as my body adjusts to the new regime. 

Lastly, my middle daughter marries in the USA next month so it'll be my first flight since diagnosis. We'll be staying for a few weeks. She's the first of our three kids to marry. We are very happy for her and our future son in law is a lovely man. Feeling blessed. 

I'll be thinking of you Rory as you crack on with your radiotherapy and hope everyone else reading takes good care.

M

Hey [@Jellies]‍ and everyone,

A brief and previously unthinkable update from me...

The scan results from 27 March were shared with Samantha and I yesterday afternoon. The oncologist was thrilled to report that I am NED (No  Evidence of Disease)!! We still can't believe it and whilst it's not a cure and I remain stage 4 etc, it does represent a rare response to treatment. They cannot see any mets anywhere which is all the more surprising because I had three very large clumps of mets on my spine, hip and pubic bone. 

The Oncologist was giddy when he said this is "complete remission". Onwards we will watch and wait, continue with the usual treatments and even move to the triplicate therapy you shared before Rory (Darolutamide) - I'll be the first in his patient list to go that route. 

Anyway, that's it from me. 

How are you?

Very best

Matthew

Hi Matthew,

This is absolutely fantastic news and has made my day. I am so happy for you and your family. I'm still smiling as I type this. How wonderful.

Enjoy your daughters wedding - what a wonderful gift to give her with this news. 

Hi Matthew I saw your very first post and followed your story and now I am so happy to know that you're doing very well indeed ,long may it continue Very Best Wishes Matthew .

Thanks so much [@sair88]‍ and [@Jenny3109]‍ ! 

It's wonderful to share the ups and downs in our journeys together. 

Your genuine support means a huge amount. 

I'm taking the day off work to gather my thoughts and try to remove this daft grin off my face . I of course know to not overdo the significance of this long term but I am going to enjoy the moment. A significant battle won albeit the war continues. 
 

All the best everybody! x

Wow Matthew! Result! Congratulations xx

Thanks so much [@Case4]‍ , good of you to reach out like that. 
 

Hope you're well!

[@Matthew2022]‍ 

OMFG!!! That is amazing.  Delighted for you and your family.

Of course there will be ongoing treatment and monitoring.  But with such an amazing response the odds of being around for quite a while yet have just tilted in your favour, which is all we can ask.   Plus there are more treatments in the locker.  Enjoy the moment - absolutely!!!

I have 1.5 weeks of RT left so lying on the sofa super fatigued.  Also on ADT and daily apalutimide tablets.  So hoping that once the RT finished up I can start some sort of durable recovery.  But your news has put a big smile on my face and really given me a boost.  Onwards  
 

Great to gear from you [@Jellies]‍! 

I knew you'd be nearing the end of your radiotherapy treatments and was beginning to worry having not heard from you for a wee while. Glad you're okay.
 

Fatigue is one aspect that surprised me. Whilst we are all forewarned it'll happen the imediacy and depth of the fatigue caught me off guard. I had to reschedule my workdays quite often but in the end I threw the towel in and informed everyone I would need time off. Looking back I should've focused on me for a change and not worried so much about my role / commitments. That preoccupation fretting about work was more stressful than being treated for cancer. Silly really. 

You will be feeling better and better after you finish RT. Let's hope we both (and everyone in our boat) enjoy a sustained recovery. It's been quite a ride so far hasn't it!

Hang tough and keep in touch. 

And thanks for your wonderful reaction to my results. Keep smiling and take care. 

Great to gear from you [@Jellies]‍! 

I knew you'd be nearing the end of your radiotherapy treatments and was beginning to worry having not heard from you for a wee while. Glad you're okay.
 

Fatigue is one aspect that surprised me. Whilst we are all forewarned it'll happen the imediacy and depth of the fatigue caught me off guard. I had to reschedule my workdays quite often but in the end I threw the towel in and informed everyone I would need time off. Looking back I should've focused on me for a change and not worried so much about my role / commitments. That preoccupation fretting about work was more stressful than being treated for cancer. Silly really. 

You will be feeling better and better after you finish RT. Let's hope we both (and everyone in our boat) enjoy a sustained recovery. It's been quite a ride so far hasn't it!

Hang tough and keep in touch. 

And thanks for your wonderful reaction to my results. Keep smiling and take care. 

Hi Matthew2022 

Just to give a latest update.  I finished my RT back in June and just on 3 monthly Decapeptyl injections with daily Apalutamide tablets.

I have monthly check ups at the clinic and PSA is still undetectable.  White blood cells are low so need to be careful coming into winter.  Will probably get flu and COVID jabs.

Fatigue has been really bad until about 10 days ago.  It has taken a lot longer than I expected to start feeling better after RT.  At least now I can go about my day and walk the dog without having to go to bed.  I’m hoping that in a month I’ll be able to get back to light running and the gym.  But not going to push it just yet.

Hope everyone is doing well!

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 Matthew - just wanted to wish you and everyone on here a Happy Christmas.

Can't believe it is 2 coming up on 2 years since I or we were dx'ed.

My latest update is PSA still undetectable.  They have moved me to 3 mthly check ups.  Still taking Erleada every day and a Decapepryl shot every 3 mths.    

My energy levels have improved.  I'm skiing this week and working with no issues.  But everything makes me a bit more tired and some days I need to take total downtime.  I also find ot that bit harder to get out of bed in the morning.  But then again maybe that just because Im a lazy sod at heart.  Of course zero libido which isn't helped by ED from having a prostatectomy.  My poor wife but she is amazing.  But hopefully in 2 years time I'll get off ADT - who knows - it's in the lap of the gods.

In summary a lot to look forward to as we head into 2024.  Started 2023 on chemo, spent a week in hospital with pneumonia and did 38 sessions of radiotherapy.  So 2024 is bound to be better...isn't it??

Best wishes to all

Rory

 Matthew2022 

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

Hi Matthew2022 

Hope all is well with you.

Yesterday was a big day for me.  The.onco took me off all my cancer drugs.  I have done two and a half years on ADT and he says it is enough. 

So what happens next is my injection lasts until end of March and I can stop taking Apalutamide immediately.  Then they I will monitor my PSA and testosterone with my GP every 3 mths and have a check in with my onco every 6 mths.

Went out for a nice steal dinner last.night to celebrate because you have to celebrate these small.wins.  

Of course as my onco says now the PSA sets start to really mean something and while we all hope the cancer is gone we just don't know.  Given that when we both started this journey my PSA was 70+ there is obviously still a risk.

For me I can't wait to get my energy levels back and am looking forward to the summer.  For anyone else out there taking ADT after radiotherapy hopefully you can also get through it and come out the other side.

Rory

Hey Jellies ,

I was thinking about you and had planned on checking in, glad you beat me to it with a great update. Thank you. 

As you may recall, I took my last ADT Zoladex injection in March and I have felt a significant improvement in every aspect since November I’d say. Energy levels up and libido increasing but still some way to go. Interestingly, my testosterone levels stayed stubbornly really low until a sudden spike in December. Correspondingly my PSA spiked in line. I‘m being tested every 8 weeks. It’s mentally odd to adjust to the scientific fact that the PSA will rise and rise. My next test is next week and I expect a further rise from the current level of 0.22. I’ve agreed with my Oncologist to restart ADT when I hit 4 PSA. He believes, depending on how I respond, I’ll be on ADT for around 8 months and then hopefully I’ll begin another ADT vacation.  Our hope is I can follow this cycle for as many years as is physically possible. 

At the end of each vacation I’ll get a new baseline set of scans and I’ll have the option to spot radiate any visual traces of the disease. As of March there was no evidence of metastatic disease. Apparently NICE only fund up to x3 radiation rounds per person (which I feel is scandalous) so I have plans to pay privately after that, assuming I survive that long. I enthusiastically plan to but you have to be realistic, annoyingly. 

Generally speaking I feel good physically and remain emotionally strong. Life and the feeling the grim reaper is lurking does affect my lovely wife and our kids, but thankfully those odd moments are infrequent.

Our new home at long last (11 months later than expected) is just about done and we move mid February. That’s hard work but fun, as you know. Our daughter arrives from America with her husband and their dog 5 days later. Can’t wait to be with them and the rest of the family.  

Work wise, I’m cracking on. Invested in two start-ups and enjoying that dynamic whilst the sun shines. In fact, our youngest son who finishes his IT degree in the summer is working part-time with one of the businesses and we’re having a rare old time together. He’s terrific and gaining in confidence and capability at a rapid rate. It’s great to witness. 

I’m sure you will benefit massively from your ADT vacation. Long may it continue! Keep me posted. 

Wishing you well, my friend.

Matthew