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PSA dropping but still feeling ill

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User
Posted 01 Apr 2016 at 15:40

Hi All,

I was told yesterday that my PSA has dropped to 2.5, which was very good news. But my general well being seems to be getting progressively worse. I have had no pain at all since diagnosis in July last year, but the last few weeks have had me reaching for the paracetamol!

I generally feel flu-ish all the time and my arms ache constantly (worse if I actually use my arms to do something, even just hold the phone to my ear for more than 5 minutes!). Is this normal?

My oncologist did say that it may be the cancer cells battling with the HT and he has ordered an MRI scan to see what might be happening, but as I said, I thought the drop in PSA count meant that the disease was under control.

I'd be grateful for any advice

 

Thanks

PeterK

User
Posted 01 Apr 2016 at 15:56

Hi Peter,

I have only just recovered in the last couple of weeks from what was over a month of colds and flu.  In the end I developed a fever, and went to see my GP as I didn't know how to tell the difference between fever caused by flu and fever caused by prostate infection which I had before Christmas.

She checked my urine for infection etc and it seemed OK, and as I said a couple of weeks later I am right as rain.

There was an article in the paper last week saying that the current flu was approaching epedmic proportions.

So perhaps you are just a little run down by cancer and side effects of treatment, making you susceptible to current flu epedemic, it may be nothing more sinister than that?

:)

Dave

User
Posted 01 Apr 2016 at 16:27

Hi Peter,


With your numbers, you cannot yet say the PCa is "under control". You'll want to see PSA down to 0.2-0.5 to be able to suggest that. What's going on is a tussle between the PCa and the HT and the PSA may bounce up and down a bit. I doubt if the HT would cause your current low feelings. Flu or another virus seems likely. Chemo would almost certainly help fight your PCa, though, so you should do everything you can to build up your strength beforehand. Good eating and exercise will prepare you for it.

Good Luck!

AC in Northants

User
Posted 01 Apr 2016 at 22:26

Peter,
2.5 might be a good score for you and your particular cancer - the problem with advanced PCa is that the PSA doesn't always reflect what is actually happening. The big question then is your testosterone score - did the hospital test this and if so, what was it. If you don't know, worth asking your nurse specialist or GP in case it is recorded in your medical notes.

If the T is above 0.7 then the hormone treatment is not getting you down to castrate level which might explain why the last scan showed no marked improvement. If the T is 0.69 or below, the hormones are working and so the tumours should shrink. If the T is 0.69 or below and the tumours grow, then you are described as castrate-resistant ie the cancer has learned to feed without testosterone. In that case, another hormone is sometimes added - or a complete change sometimes works wonders.

Assuming your T is fine and the tumours are not increasing, then the symptoms you describe could be an extreme reaction to the degarelix and a change to another hormone might make you feel much better. I would also be worried in case you are taking too many paracetamol (you aren't mixing them with other paracetamol-based things like lemsip by mistake are you?)

Edited by member 02 Apr 2016 at 16:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 01 Apr 2016 at 15:56

Hi Peter,

I have only just recovered in the last couple of weeks from what was over a month of colds and flu.  In the end I developed a fever, and went to see my GP as I didn't know how to tell the difference between fever caused by flu and fever caused by prostate infection which I had before Christmas.

She checked my urine for infection etc and it seemed OK, and as I said a couple of weeks later I am right as rain.

There was an article in the paper last week saying that the current flu was approaching epedmic proportions.

So perhaps you are just a little run down by cancer and side effects of treatment, making you susceptible to current flu epedemic, it may be nothing more sinister than that?

:)

Dave

User
Posted 01 Apr 2016 at 16:27

Hi Peter,


With your numbers, you cannot yet say the PCa is "under control". You'll want to see PSA down to 0.2-0.5 to be able to suggest that. What's going on is a tussle between the PCa and the HT and the PSA may bounce up and down a bit. I doubt if the HT would cause your current low feelings. Flu or another virus seems likely. Chemo would almost certainly help fight your PCa, though, so you should do everything you can to build up your strength beforehand. Good eating and exercise will prepare you for it.

Good Luck!

AC in Northants

User
Posted 01 Apr 2016 at 22:26

Peter,
2.5 might be a good score for you and your particular cancer - the problem with advanced PCa is that the PSA doesn't always reflect what is actually happening. The big question then is your testosterone score - did the hospital test this and if so, what was it. If you don't know, worth asking your nurse specialist or GP in case it is recorded in your medical notes.

If the T is above 0.7 then the hormone treatment is not getting you down to castrate level which might explain why the last scan showed no marked improvement. If the T is 0.69 or below, the hormones are working and so the tumours should shrink. If the T is 0.69 or below and the tumours grow, then you are described as castrate-resistant ie the cancer has learned to feed without testosterone. In that case, another hormone is sometimes added - or a complete change sometimes works wonders.

Assuming your T is fine and the tumours are not increasing, then the symptoms you describe could be an extreme reaction to the degarelix and a change to another hormone might make you feel much better. I would also be worried in case you are taking too many paracetamol (you aren't mixing them with other paracetamol-based things like lemsip by mistake are you?)

Edited by member 02 Apr 2016 at 16:57  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Apr 2016 at 16:17

Thanks to each of you for your replies. They all make sense and I can see now that I have been placing too much store on the PSA result.

I have no idea what my T level might be, but I will try to find out. What you say makes perfect sense Lyn, thank you!

I think I had decided in my own mind that my symptoms were a reaction to the Degarilix, but the oncologist felt that it might be the tumours fighting back. Hence he has arranged the scans. So we will see what the results are from those.

Ironically, I have been feeling much better today, though I am still not out of the woods. But I am hopeful that these flu like symptoms are easing off a little.

Dave and AC, it looks like you have both really been through the mill lately and Lyn, you have been through it all 3 times! I think you are all to be congratulated on your tenacity and long may it continue.

Good luck

 

Peter

User
Posted 02 Apr 2016 at 16:23

Sorry Lyn, I missed the response to your concerns over the paracetamol. No, I am taking in very measured doses and only when I feel that it may help. (none so far today).

I do have to be careful about what medication I take since I have had a bad heart condition for the last 20 years and many of the medications I take for that contraindicate with pain relief medicines, so I am well rehearsed in what I can and can't take.

But thank you for your concern, it is really appreciated

 

Peter

 
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