PSA fluctuating wildly

It is patently clear that the Degarelix is not controlling your cancer the way it should - this is often referred to as being castrate resistant or hormone independent. Some men can have HT for many years before it fails but in other cases like yours, that happens very quickly. If your treatment hasn't been changed since the PSA started to rocket, I would be expecting the onco to explain why. There are a number of options (adding bicalutimide, stopping bicalutimide, adding enzalutimide or abiraterone, trying a different chemo called cabazitaxel) but I would be a bit doubtful of the value in having docetaxel again since it didn't seem to do much good the first time round.

Some men last for years on HT, sadly for some men, it just doesn't work well for more than a few months. As you say, how you are feeling is more indicative than the bald numbers.

Glad you are seeing an improvement in symptoms Dean. 
 Best wishes for 2021.

I'd kinda got my hopes up after the first round of treatment that it would be a couple of years before I needed to move on to the next stage - it was quite a blow to find I only got a couple of months. Along with increasing discomfort caused by the cancer spreading to one of the pelvic bones and pressing against a nerve - it was definately not a good end to the year.

I don't think there is any answer to all this. It is what it is, and you've got to keep on dealing with whatever's happening. I've no idea what fresh hell may be around the corner, but thinking about the possibilities certainly doesn't help, so I stick to the three things I can do: eating healthily, exercising regularly and staying positive - all easier said than done, but they certainly make for a better quality of life despite what the cancer may be doing.

I understand completly your comment about the first line of treatment failing so soon, but on the positive side it did buy you some time, just not as much as you'd hoped for. Same here.

I here talk all over the place about what an awful year 2020 was with COVID, but to me it was quite a good year - every day was a bonus, and during the summer at least I got out and about as much as possible whilst staying COVID safe. I'm approaching 2021 with a similar view - I've no way of knowing what's coming, but from the start I determined to fight like hell to keep going, and I intend to be here in a years time, looking back on 2021 with good memories of the best bits, of which I'm confident there will be a few.

Hope this helps in some way, and that things work out well for you over the coming weeks.

I guess what troubles me in the small hours when I can't sleep is that I sketched out a road map for my future with various mileposts along the way, and and stuff I wanted to do. Everything seemed to be going well. Then suddenly I find I'm a lot further down the road than I though I was, or should be. Maybe the map's all wrong. Perhaps I'm looking for some certainty - though I know that's not possible.

So I'll keep moving on, and see what happens - I love roadtrips...

Hi Dean,

“I don't think there is any answer to all this. It is what it is, and you've got to keep on dealing with whatever's happening. I've no idea what fresh hell may be around the corner, but thinking about the possibilities certainly doesn't help, so I stick to the three things I can do: eating healthily, exercising regularly and staying positive - all easier said than done, but they certainly make for a better quality of life despite what the cancer may be doing”.

Thank you for that. You are so right, it is all so recognizable. I am not there yet but I hope that in the near future I ll find the same attitude! 

Best Regards, Marcellus

That's interesting to know Barry. I was curious as to why the consultant wasn't concerned over a 0.25 rise. Now I know 🙃

Thanks everyone for your responses.  It was great to get the latest test results.  But a slight feeling of Deja-vu, it's just over a year (January 2020) since my PSA came down to 1.14 (from around 1300) as a result of Hormone Therapy (Degarelix).  But then within a few months it started rising, relentlesly, to over 500 by December 2020. 

So I'm just a bit wary about how long it will be before then enevitable happens - it's kinda souring the whole feeling.  I want to hope for the best, but don't want to set myself up for the disappointment that I felt last time.  And the whole COVID thing is finally starting to get to me - I'm getting a bit fed up with not being able to go anywhere, or tick things off my "Bucket list".  Sigh...

Having said all that I'm still trying my best - instead of sitting at home watching summer role by whilst waiting for some sunny weather to rock up, I'm looking out across the wild landscape of the Isle of Lewis in the outer Hebrides. There's just weather up here, and it's all over the place. Despite the fatigue and lack of energy I've forced myself to do walks - nothing on the scale of stuff I did in my younger days, but yesterday evening I was sat on a hilltop with clouds racing over the mountains behind me and the sun glinting off the sea in front - munching away on my peanut butter sandwiches... Not quite abroad, but as close as I could manage this year, and certainly worth the long journey to get here.

Latest PSA tests: 24 Aug, result 21.8; 1 Sept, result 25.9 (increase of 4.1 or 19% in 8 days... indicative of a doubling time of 42 days/6 weeks - if my maths are right...).  Pretty much in-line with what was happening a year ago.   So it looks like Enzalutamide started failing after 7-8 months.  Really not sure what to think about all this.  Hospital / Onco has been silent about all this - even the senior nurses have failed to respond to my voicemails - I only got the results by trying other channels.  I'm taking this as a sign that there's nothing to be bothered about yet, or maybe I've just slipped off the radar... I'm not expecting anything big to happen, but just a call to say they're monitoring the situation - nothing to worry about, so get on with and enjoy life?

I'll certainly ask about Stilboestrol and Bicalutimide - I'm prepared to give pretty much anything a try if it can buy me more time.

This is the second time I've found my PSA rising rapidly after treatment that would have hopefully seen it drop to single figures and stay there for a while. I take this as an indication that the cancer is quite aggressive, and therefore my long-term outlook is rather bleak (ie I haven't got a long term outlook) which has put me on a bit of a downer over the last few months. But maybe I'm wrong, or not really well informed about this? I'm lucky that I have a really good GP who's support has been amazing throughout - he's put me in touch with a counselor who I can talk to when things get a bit to heavy for me to cope with alone. This is great, but I've nobody to talk to about my actual cancer situation and treatment - someone who has all the knowledge and can explain to me what's happening, and perhaps put my mind at rest for a while.

I feel fine at the moment, but it feels like there's a spectre looming over me, about to pounce at any moment, and then what? At the beginning of this year I was feeling confident about still having quite a lot of quality time left to live. I'm now starting to feel that maybe I'll see out the next year, but much of that time will be affected by having chemo, and so the "good times" are nearly up. I don't want to feel this way as it isn't the positive mindset I managed earlier, and it could become a self-fulfilling prophecy.

When I've spoken to the Oncologists or Doctors / Fellows they've told me that the timing of any new treatment is important.  They admit there's only so many treatments available to me, and if we go through them too rapidly it will reduce my life expectancy, so getting the maximum use out of each treatment before starting the next is the line of thinking.  One of the nurses suggested I should stop bothering with wanting to know my PSA score and focus instead on how I'm feeling - they will do the monitoring and when they feel it's time to move on they'll let me know.  I can see the logic in this, although (perhaps unfortunately) I'm one of those people who just has to know what's going on...  Last year after HT + Docataxell + Radiotherapy my PSA rose to about 500 before I started on Enzalutamide, which saw my PSA come falling down to less than 2 before slowly starting to rise again.  I was hoping Enzalutamide would keep it low, for a while at least, but I also knew it might not.  My GP has tried to give me some hope by suggesting that my PSA could rise but stabilise at some point, at least for a while. 

I'll certainly give PCUK a call and talk to one of their nurses.  I know that cancer affects people in different ways, so there's no easy / uniform answers to my questions, but I feel very under-informed, especially when I go through some of the other conversations here and read what others say / know about their own situation.  I often don't understand half the stuff they're talking about (all the abbreviations don't help either).

I found Trevor_Boothe's profile and read through it all - what a remarkable man, and how lucky he was to have such a supportive partner.  The "Train journey" story/poem was a really good way to view what they were going through - it made me smile.  At the time I read it my own personal train journey seemed to be turning into something like the one in the Shawshank Redemption!  I just need a little help throwing the switches that control the points so I can get back onto the right track.