So, a couple of months has flown by and,case predicted, my cabazitaxel chemo has definitely stopped working. I've just had PET PSMA, CT and MRI scans and they all say the same thing. The two lesions in my liver have started to regrow and my PSA has doubled in the last 6 weeks and now stands at 10.0. so, once again I'm in limbo trying to understand what's next. I'm so used to being able to work through problems and solving them that I'm finding this so difficult, waiting for others to provide answers.

Hi TimR123 , so sorry to hear you are back to square one.  Unfortunately I can’t be of any practical help, other than to say we are all behind you.  Hope you get some answers soon.

So sorry to hear about this TimR123.

Has your oncologist ever mentioned the drug Abiraterone it’s a wonder drug.

my psa now 0.6 from 3761 May 23 upto now.

With the combination Degralix now prostrap 3 monthly.

Sorry to hear about Lu-177 let you down it seemed a good banker according to Andy Taylor from Duran Duran.Everyones body reacts Differently though.

Never give in True warriors win.

Arnie

Tim, who do you talk to?

Being stage 4 to start with there is a huge mental pressure on you to be strong. The fact is, it’s terribly hard to sustain that over the years you’re surviving PC.

I have struggled at each point there’s a change in my body and the changes that the clinicians make to bend the medication my way. It’s happened 3 times over the 3 years I’ve been stage 4 (bones only) and each time I’m sent into a tailspin.

The only way I helped myself was with counselling. The first two times my Darling and my friends were enough, but as the reports grew ever more scary I needed more help. I needed professional help just to keep my mind pointing in the right direction. Each time I’ve had the help of professional counselling, I’ve been able to pull out of the tailspin and start to fly again. I would say you need help too, in whatever form you choose.

Ive heard Maggies are great, but I’ve not got one local, but my local Hospice helped me with their own councillor. I had the Hospital councillor too which was a MacMillan one and both were remarkable in helping me see that the way ahead was not the gloomy one I thought it was at the start.

It’s not that simple I know. I was desperate at times and shed countless tears, but I did change and get my head working for me not against me like it was.

The change and rise in your PSA is daunting. I used to hold a lot of stock in that one measure, but during the Carboplatin chemo I endured the PSA went from a troubling 133 to a ridiculous 715. It was this that made me think that there’s only so much the PSA can tell us. It’s an indicator. It’s not my world any more, and I’d like it to go down even further than the 258 it was at the last blood test, I down worry so much about it.

whats more important to me is following my nose towards life and all that I know I love about it. My muscle strength is weakening but it’s just another test and limitation I need to find and smash thru if I can.

So, I can’t help you with a magic cure for your salvation but like many others here, we are with you in you hours of need which I hope helps you a little.

You are not defined by your illness, you are a unique human with an inner strength you need to tap.

If you can stay positive then that’s good. Let yourself have bad days, but wake everyday with a hope that this new day will be fun — which it might be if you try.

Good luck  

Hello Tim and Mr U

sorry to be late to this post. We have just returned from holiday and I have taken a complete break from all emails !

First, Tim, I’m sorry to hear that you are having continuing problems on this prostate cancer journey which is so difficult for all affected by it. It’s not what any of us would wish for and it sure does throw challenges at us.

i can’t give you any medical advice as you are further along the road than we are. I do, though, fully understand the emotion sitting behind the medical facts and figures.

In respect of this emotion, I wanted to respond to Mr Us words. I found them incredibly brave, honest and, in some way, soothing! I also realised that a lot of the things he spoke of are associated with the physical losses we all experience as we progress through the ageing process. We all have failing body parts, less energy, fears and thoughts about our future demise. Mr U seemed to sum up how I, without a cancer diagnosis, have experienced life at times since my husband was diagnosed with prostate cancer 3 years ago.

i have taken Mr Us words very much on board and hope that you, Tim, can find the same comfort from them as I have.

Thank you Mr U - wise and brave words indeed!

I wish you both all the very best x

Thank you so much for your wonderful message. It meant a lot. I'm still struggling a lot. Every time I receive some bad news I spiral downwards and I find it so hard to bring myself back up. A friend of mine who has lung cancer has been told that his condition is now untreatable. I can't imagine what that news did to him. For me, I've just been told that restarting the lutetium treatment is no longer an option. I was really banking on that as the next step. Now it appears my only option is a different, more aggressive, chemo or nothing. Neither option feels good. The prognosis is 6-9 months without treatment.

Hello Tim (TimR123) 

Thank you for the update, I am so sorry to read that things aren't too good and

TimR123 said:

Every time I receive some bad news I spiral downwards

This is of course a natural reaction to bad news and without exception we all do it to some extent. There is help and support available and I would encourage you to contact our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week). They are a great set of people on the Support Line and they will be able to point you in the right direction for help and support with your feelings.

Best wishes - Brian.

Thanks Millibob. I'm guessing, until I actually speak to my oncologist, that the next, and only, treatment that will be recommended will be carboplatin and etoposide chemo treatment. I've heard that it is more aggressive and the side effects worse. Has anyone had any experience with this treatment?

carboplatin and etoposide

Hello Tim (TimR123) 

I have managed to dodge Chemotherapy so far. I am aware we have Community members who have had Carboplatin and i hope you get some replies.

Just in case you haven't seen it, here's a link with our information:

Carboplatin-and-etoposide.

I hope this helps.

Best wishes - Brian.

Yes the Carboplatin was my first chemo and it must mean you are Braca2 because it’s a specialist medication for us that are DNA mutated.

it will be the best chemo and is a little less harsh on the body that most chemos, I was told.

what do you know about it?

As for the friend with lung cancer, a diagnosis of untreatable is for the patient just another string of letters explaining how bad things are, but we already know that.

The problem we all face is knowing just where we are on this pathway and there are only treatable and untreatable. Yes there’s degrees in those two positions but it’s a hell of a jump for the onlooker but for the patient it’s just another day in the world but someone has now decided for you that your status is now changed. So what?

Im still here. Im still helping myself and others and in my world nothings changed.

take heart and believe in yourself and what you can do. It’s not what you used to be but you are still here and ready to breathe another day.

Good luck today and every day