[@Billygoatt]‍ 

Hi - just thought I'd say hello and see wlhow you're getting along?

All the best,

Matthew

Hi Mathew, managing ok resting more often than usto, still keeping garden tidy and the house. 

Being back on enzalutamide lowered my energy levels and puffing like an old steam train after doing anything least strenuous including walking, very annoying as i usto walk miles and was very fit (even if i say so myself)usto have a good 6 pack now it's flabby, i always usto be 10.5 stone for over 50 years. With treatment i went to 13 had a job reaching my feet, tummy in the way im 11.7 now but would like to loose more. Im talking to oncologist next week about enzalutamide which is causing problems. Including hot flushes weight on and plenty more. 

Chemotherapy made my memory terrible (chemo brain).I'm also under endocrinologist for other problems (Addisons)adrenal glands don't work so permanent meds to stay alive, only enzalutamide interfered with blood results so I've 2 specialists trying to figure out what to do next, and im in the middle could be interesting. 

I'm still positive even though few bumps in the road. 

I was originally given 5 years max it's over 6 now, main trouble is tiredness. Need a sleep in the day. Just not me that usto keep going. 

I can still remember my 65 birthday in hospital because of alot of bleeding from back passage, laying on my side legs bent having a camera pushed up same passage to see it it was cancer, specialist took extra photos for me especially for my birthday of the a lovely circle of hemorrhoids like petels of a flower. Didn't have hemorrhoids until started chemo. 

I keep reading your and jellies stories, it's nice to have others to talk to about things. 

Remember keep positive and sure. 

Billy 

[@Billygoat]‍ ‍

Good to hear you are still trucking on.  Getting back from 13 to 11.7 is a good achievement.  I'm also 10.5 stone and just starting ADT so lets see... 

[@Matthew2022]‍ 

My latest news is that I went to the medical onco last week.  On the way in I told my wife it was just going to be bad news so be prepared.   Anyway he wasn't aware of my biopsy so when he checked it on the system he said it was clear.   Wasn't expecting that.  He then calls the radio onco and they agree that I go on ADT (1 month Bicalutamide with a Decapeptyl injection).  He will then review in a month's time to see what they do next.   They will do standard pelvic salvage radiation but he said they might do chemo first given my age.  He also said they might add abiterone to the HT if I am tolerating the ADT.  

So I'm still looking at 2 years ADT, pelvic radio, and possibly chemo.  But at least there is some possibility of shaking off this darned disease. As he said, they will give me the benefit of the doubt and I'll guess I won't find out until 2 years down the road when I come off the ADT. 

Hope you are all keeping well. 

[@Jellies]‍ 

That's fantastic news! I admit to feeling apprehensive waiting for the update. I'll check the notifications settings as I thought I'd receive an alert once you posted. I thought I'd double check and here we are. Hope springs eternal. All things considered, this is really positive. 

My scan results are still overdue, I'll keep you posted. 

We moved house after over 18 years last week. All part of the financial planning aspect of our new normal. 
 

All the beet,

Matthew 

[@Matthew2022]‍

Hi Matthew

Hope all well.  Latest update is confirmed Taxotere 6x3 infusions to start on 25 November.  So going to take a weeks holiday next week.

My latest PSA is 0.57.  This is after 6 weeks of ADT and 4 weeks since Decapeptyl shot.  My previous reading about 8-9 weeks ago was 0.83.  So no idea if this is good or bad but I suppose a reduction is generally good.

How are you getting on?  Any tips for getting through chemo.  Trying to figure out in my head how long I can continue working for?  Will I get able to go to the gym or just far too tired?  I guess for some of this will just have to wait and see how I feel at the time. 

Wishing you are your family well in your new abode.  Fair play to you being so proactive and with a bit of luck which you well deserve you will be around for many years yet to enjoy it. 

Rory

Hi all after stopping enzalutamide again and feeling alot better for 2 months despite psa going over 10. I started with back pains, called oncologist and explained that i had back problems when i was working carrying and moving steel plates about, but they insisted its cancer so another ct scan and bone scan to confirm, then told radiotherapy so on the day im ready, told im having another ct scan and tattoo to mark where RT to hit, that's this Friday. Then see oncologist Friday as well. So much for retirement and taking things easy. 

Wondering what oncologist will tell me about psa and treatment. 

Billy 

Hey Rory [@Jellies]‍ 

Great to hear from you and even better to see your PSA levels being kept well and truly at bay. Must be a great relief for you and your family. 
 

My PSA rose during and after chemotherapy. Trying and succeeding to not panic. Here are my results and timeline, what do you think?

61  - 9 Feb diagnosis 

4.3 - 30 Mar (HT started 4 Mar)

0.67 - 5 May (Chemo started 9 May)

1.3 - 17 June

1.1 - 27 July

0.91 - 7 Sept 

1.3 - 12 Oct  (Chemo ended)

1.5 - 18 Oct 

1.2 - 26 Oct

1.3 - 2 Nov

i am told that chemotherapy can sometimes cause fluctuations and increases in PSA but I guess time will tell. You're right to assume that everyone's chemo experience will be different but i would expect the cumulative effects to increase as time goes by. My last three infusions and 6 weeks after finishing were the worst. Fatigue, brain fog, sleeplessness and general aches steadily increased. The weight gain was staggering. You may need to forewarn at least your colleagues that you may need flexibility or more time off which may increase as the treatments add up. Gym attendance was nonexistent for me until the week before last. You may well feel stronger than I did.  I did manage to go for long walks at least once a day, often twice, in the first half of treatment. Adter that it became hard to walk as far and work...so I reduced both to suit. I've only just got back into full time and productive work. 

Radiotherapy starts a week today, 20 fractions every week day until 13 December. Hoping that it'll drop my PSA down below 1 again. I hope it doesn't set me too far back in terms of work and energy.

We're very happy in our new spot in North Yorkshire. That's a relief.

Let's keep each other posted. And remember, if you need anything, just ask. 
 

M

Hi [@Billygoatt]‍ 

A hormone treatment holiday sounds wonderful but the new aches and pains is always going to rattle the cage. How is your wife and are you still coping as her main carer?

Please let us know what happens next in your epic journey with this, as I think you have said before, uninvited guest. 
 

All the best!

M

Thanks for that update [@Matthew2022]‍

Sounds like Feb-Apr could be a write off but hopefully OKish up to then. Were you on steroids for the treatment leading to weight gain?   I was told today I would not need steroids (prednisone) but would some sort of injection to help bone marrow health and help fight infection.   Also to take Dexamethazone before and after treatment.  Plus other anti nausea and anti ulcer medication.  Quite the shopping list.

Ref PSA.  Honestly I have no clue.   In 1 month of HT yours went from 61 to 4.3 but mine went from about 1 to 0.53.  No idea what that means so not gonna worry about it now. With my data science hat on I would say your PSA has been basically flat since June.  I've seen some reports that chemo can make it fluctuate a bit and hopefully the RT gives it another whack.

I hear Yorkshire is really nice.  We're in Dublin but my wife's sister lives up that way in Ilkley.