[@sair88]‍ and everyone,

My heart goes out to you, your loved ones and of course your poor dad. The waiting is just horrible and all encompassing I know.

Sensing your love for your Dad and the pain you're experiencing floods my mind and soul with my own memories. It's just overwhelming isn't it. Having passed this way alongside [@Jellies]‍ and other fine people in this forum lends a perspective that can only come in time I'm afraid. Trust me, trust our collective voices, when we offer hope and encouragement. 

There is so much of life and love ahead for all of you. This period of likely diagnosis and initial treatment is not without its very real challenges of course, however, hidden deep beneath the surface are poignant lessons and wonderful moments. Families are fortresses in trialing times. My family and friends are everything to me, as I know they are for you. My kids at diagnosis last year ranged in age from 25 to 19 and whilst it's been bewilderingly painful for them at times, we're able to live our lives to the full. Your love and steady support will continue to be a source of strength I am certain. 

Being here in this horific situation is a terrible shock. PCUK is also a great source of knowledge and care. Avoid reading too much on the web though, stick to proven expertise from trusted places. You and he are always welcome here. You're amongst friends who truly understand. I have experienced a closeness and yes, love, from hitherto perfect strangers. They soon became important confidantes, mentors and friends. 

As you asked, 1 year in, I'm physically, mentally and spiritually/emotionally far better than I feared could be the case in the beginning. I have a set of tests and scans next week. This cycle of examination and waiting for results is my lot for life now. That's not a grumble. I'm incredibly grateful we live in a society where world class treatments are available.  Many are not so fortunate. 

Please keep us posted about how you and your dear father are getting along. 

Take care, thanks for reaching out. 

Bless you!

Matthew

Thank you Matthew,

You are truly inspirational and have brought great hope in my darkness.

Thank you once again. I don't know if you will ever know just how much I, and I suspect silent others as another poster put once, have been helped by you and your friends on this forum. 

I wish you all the luck with your next scans and of course will be thinking of you. 

Keep us updated and know you have others thinking about you too. 

I have no doubt your family are so proud of you, your being and mindset. 

S

Best wishes to all

[@Matthew2022]‍ Really hope all the scans went well for you. Fingers crossed all the treatments continue to do their thing. 

[@sair88]‍ There are definitely very rough moments during all the diagnosis.  But it does get a bit better once a treatment plan is put in place.  As Matthew says we are so fortunate with the medical experience and technology available to treat this disease and it is improving all the time.

My update is that I finished my last chemo session yesterday.  Woo Hoo.  I pushed it out a week to allow for a final ski trip which makes three vacations during chemo.  I was determined not to look back at it all and say I had a poor quality of life.  Quite the opposite, although I am glad to be finished with it and hopefully can start to recover from the fatigue.

I also had a planning RT scan and will start 8 weeks RT in 3 weeks time.  Everything looks to be in order on that front.

They will also add an extra hormone drug to my ADT.  Again this starts in 3 weeks time.  Not sure which drug it is as there seem to be options (abiraterone/apalutamide/darolutamide) but I have total faith in my onco to chose the best regime for me.

Also back to work slowly after all the chemo.  I'm told I might need some sick leave at the end of RT but will make the call at that time.

Rory

[@Jellies]‍ It's good to hear from you Rory. 

Congratulations on completing the chemo!! Did you ring the bell? 

Three holidays including skiing during chemotherapy is crazy impressive, all I managed to do was go for long walks. Your personal training regime with your wife paid dividends. 

Back to work too. That's great. Personally I found the after effects of RT, most noticbly fatigue, particularly hard to handle. I've never been one for napping. In fact I don't recall having ever dropped off before diagnosis. Before the treatments I would decide to sleep. During the latter stages of RT there were many times I simply couldn't keep my eyes open. Whilst that phase only lasted a few weeks, I found my sleeping patterns became badly affected. Zoplicone sleeping tablets helped a bit. A month after treatment ended in January I finally managed to return to almost normal. 

So, in my experience, planning some leave or flexible hours is a good move. 

It'll be interesting to hear the rationale from your oncologist for whichever secondary hormone treatment you are offered. I've done some research and it seems to me there's little in it between them all. Enzalutamide is another popular option they no doubt will consider. Why are they adding the extra hormone drugs at this stage? For me they have said they'd introduce one when I become hormone insensitive or if scans show disease progression. I know some oncologists sometimes advocate a more dynamic multi pronged strategy. 

I'll share the results from my scans / PSA / testosterone tests when they're in. Hoping my PSA falls from the 0.5 reading taken in January. 

I had a dream recently that my Oncologist reported "no evidence of disease" NED. I was rather dischuffed when I realised it wasn't real and woke up.  

We can but live in hope eh!

All the best Rory and everyone, stay in touch. 

Matthew

[@Matthew2022]‍ ‍ 

dailynews.ascopubs.org/.../arasens-darolutamide-plus-adt-and-docetaxel-may-become-new-standard-care-mhspc

Here is an example of a paper that talks about adding Darolutamide to treatment for metastatic Hormone Sensitive PC.  I think this is the type of regime I am following because although I'm potentially on a curative pathway I am high risk due to my high PSA and I had a scare with a Hilar lymph node.  Also given my relatively young age my oncos have taken a hit it as hard as possible approach.  Anyway I will find out on the 19th what drug they are proposing and will let you know.  The nurse told me it is a new regime for them so I think the use of some of these drugs is constantly being reviewed as trial results come in and are adopted.  

Obviously everyone's treatment is different due to their disease so I would be the last person to say the approach for myself is the correct one for someone else.  Everyone's pathway seems to be a bit different.  If I understand it correctly the conclusion of this ARSENS trial is that it prolongs reaching castrate resistance so could be worth reading up on and figuring out if relevant to yourself with your medical team.

Thanks for the tips on RT.  I have found myself hitting the wall a good few times on chemo so not adverse to an afternoon nap here or there.

Keep dreaming.  Have to say I shed a few tears when I got in the car and it hit me that the chemo was over.  Sometimes we need to pat ourselves on the back for getting through all this in one piece.  Onwards! 

Rory

Just to add to above, my onco explained the trials and intro of new drugs like this.

When a new drug comes out they first test it in more advanced cases because there is lower consequences for the individual if it doesn't work.  Then as they get more data on satefy and efficacy they move it down to earlier in the treatment so gradually it is used on healthier individuals earlier in the cycle, provided it works better than prior treatments and is safe.  This process can take a while because prostate cancer develops over many years so the results from various trials take years to come out.  He said they are now starting to conclude that front loading treatment is often the best approach based on results from new drugs and the various trials.

Please take with a grain of salt as a layman's understanding....

[@Jellies]‍ Hi Rory 

This is really useful and I have already asked my oncologist to comment .

I had pushed for front loading initially but relented after discussion. Armed with this sort of data and research will give me a second chance to challenge the approach. 

Really really really appreciate the info. 

Very best,

Matthew

Hi [@garfy]‍ - sorry to hear your PSA is rising. A bit surprised the medical team won't investigate further until and if your PSA hits 11 but I trust they know best. 

Good luck with everything. 

Matthew

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.