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 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

Good luck with the RT Billy.  It will be further down the tracks for me. 

Sounds like you are really buying into the concept of active retirement if you are out and about moving steel plates around. 

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.  

Hey [@Jellies]‍ 

Yup, I reckon the steroids were the main culprits for weight gain. Since stopping I've managed somehow to shed a few pounds and rid myself of the so-called "round face ". I looked like a chubby chipmunk. 

Your data pattern comment made me smile. We both work in the same sector. Im always banging the data driven decision making drum. Well, until it's unhelpful and I resort to the trusty hierarchical method. Ha.

Hope your pill popping regime isn't too bothersome. You will likey do well, being younger like me we can withstand quite a battering.

Take care, you're doing really well!

M

Hey [@Jellies]‍ 

Yup, I reckon the steroids were the main culprits for weight gain. Since stopping I've managed somehow to shed a few pounds and rid myself of the so-called "round face ". I looked like a chubby chipmunk. 

Your data pattern comment made me smile. We both work in the same sector. Im always banging the data driven decision making drum. Well, until it's unhelpful and I resort to the trusty hierarchical method. Ha.

Hope your pill popping regime isn't too bothersome. You will likey do well, being younger like me we can withstand quite a battering.

Take care, you're doing really well!

M

Hi Matthew, 

I came across the forum as my dad has just been diagnosed with a case nearly the same as yours and panic stations have set in.  I was just after a update on how you're coping and how you're doing now?

Many thanks 

Tom

Hello Tom,

Firstly, I am so sorry to hear that your Dad has been diagnosed. The initial feelings of disbelief, shock and fear are of course very real but believe me, he and you will adjust. Many men can expect many years of life given the ongoing development of new interventions and innovations. 

This forum and others such as PC UK are excellent amd safe places to seek counsel and give/receive support. If you're comfortable, tell me about your Dad. 

As for me, I'm newring the end of 20 fractions of radiotherapy to my prostate.  I'm feeling positive despite handing the common side effects. PSA last time I checked was 1.3 and hoping the radiotherapy will knock it lastingly below 1 soon  

Hang in there.  
 

Matthew

[@Jellies]‍ Hi buddy, how are you and yours?

Hi Matthew  radiotherapy went fine, bit of pain hours after and tired for days. Started chemotherapy Monday, 10 sessions every 3 weeks. Lovely Christmas present.  Have to see what side effects hit me. Oh and I've some syringes to self inject from Friday boost my white blood cells, not sure i can do it yet. Nurse was supposed to explain what to do, but went off and i couldn't find her before i left. 

Have to see how things go. 

Billy 

Hi Billy - you're certainly going through an intensive period of treatments (I know the feeling). Best get back to the nurses and see what you need to do. How is your wife and are you coping with all her care arrangements? Lots going on. 
 

No doubt you'll approach this next phase with your characteristic fortitude. 
 

Take care. 

Hi Matthew,
 

Yes it was a massive shock to the system, as we was expecting the prostate cancer but not the spread. As time has gone on we have are slowly coming to terms with it. Just hard not trying to think of it all the time and my dad thinks his time will be up very soon, which I keep assuring him it won't.

Abit of back ground on my dad he's 54 and was weeing all the time. I tried for ages to get him to go to the doctors but wouldn't listen as he thought it was because he was getting older, it wasn't until he had a burning sensation he decided to go to the doctors.Where they did blood tests and his PSA came back at 53.3. So he got referred to the hospital where they done all the tests on him. We went to the hospital on Thursday where they gave us the news that he had prostate cancer and had spread to his pelvis and rib. The Gleason score was 4 + 5. They have started him on hormone injections and has been referred to the oncologist.

Did the radiotherapy and chemotherapy knock you about much? Me and my dad are self employed bricklayers and he's worrying about money and the amount of time he's going to have off. He has life insurance and critical cover which we will be sorting out soon so hopefully that will be able to take a weight off his shoulders. I know he likes being at work to so we don't want him to be lost without it, but it is what it is.

Really happy to see you're doing well and getting the results you want. Thank you for replying and I wish you and your family all the best.

many thanks 

Tom

Hi Mathew. All ok with my boss still gives orders daily and must be obeyed. 

I've found a neighbour who has injection same as me and going to show me what to do this evening.  So getting sorted finally. 

Carers are a laugh turning up anytime or not a all or just a phone call from there office saying is earlier or later ok. Simple answer no supposed to be set time. 

Luckily im still managing ok yet. 

Billy 

Hi [@Matthew2022]‍ 

Thanks for the check in.  Was just thinking of you and logged in so just saw it now. 

Did my first round of chemo.  Was pretty tired for about 4 days and by 8 days afterwards was pretty much back to normal.  I made sure to walk every day and four days after I went to the gym and got through a session even if a bit fatigued.  Myself and my wife have a personal trainer in the local crossfit gym and I find the mental and physical boost from pushing weights and making progress despite all the treatments really helps me.   This week I also came out to France skiing and head back today for the next round of chemo on Friday. Also hoping to come out in January if the chemo treatment remains tolerable. We'll see. 

My PSA came down to 0.2 on the ADT just before I started chemo.   The onco said that when chemo stops I will be also put on Abirarerone and the ADT treatment will be for three years due to the high risk cancer.  Although he said the decision of when/if to come off is for down the road.  Also radio will follow the chemo so gotta go and have planning scans in the new year. 

One day at a time.  Really hope you are all doing well and enjoy the Christmas break. 

Rory

Billygoat

I have the same injection.  It is called Neulasta. 

The Nurse came and did the first one for me and my plan for the next one is to look away and the missus can do it.  She did all my Clexane injections after my prostatectomy.

Best of luck with the chemo.  Hopefully you can get through it. We are both starting around the same time but I have 6 cycles.

Before my first cycle I had to take Dexamethazone tablets which made me feel dizzy and was slurring my speech.  Am hoping it's not as bad this time round. 

Rory

Hey [@Jellies]‍ 

Great to hear from you and learn about your recent experiences on this winding journey we're on. 
 

First off, getting your PSA down to 0.2 is tremendous! The best I achieved was 0.6 briefly before chemo started whilst on ADT. I'm hoping it drops to your levels now the radiotherapy has ended. I get tested in early January so we shall see. 

It's brilliant you're able to hit the slopes. Let's hope you can keep returning despite everything going on. Physical exercise is increasingly being seen as a significant aspect contributing to not only quality of life but overall longevity. I need to get back to it. 

Overall I'm feeling pretty good mentally and physically. The unpleasant/painful side effects from the zapping are reducing rapidly thanks to the prompt intervention of wonderful nurses. Disposable undies will be retired this week . 
 

My long standing serious illnesses policy claim with Vitality was denied on very spurious grounds. After studying my health records they saw I had two high ish blood pressure results and said I should have disclosed it. I was never treated because my blood pressure went back to normal. Also my GP said there was nothing to worry about. Their view was that effectively my policy was null and void from day one due to a failure to disclose accurate information etc. I will appeal. Very disappointed and fed up about that. 
 

It will be good to hear how you cope with the treatments and how life is, appreciate your messages very much. 
 

You've got this!
 

M