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

[@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. 

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!