Early rise in PSA after 3 months of HT

User

Posted 27 Feb 2019 at 07:28

Hi, im very worried about rise in OH’s PSA (4.93) disclosed yesterday, also persistent groin pain and high (although fallen) ALP. Has HT stopped working alrady? Please see profile for details. Any comments gratefully received.

Thanks

Bettyx

User

Posted 27 Feb 2019 at 22:21

I'm afraid I'm not an expert, but for me, groin pain is just a symptom of the disease.

He has definitely been in the wars in a short period of time. My urologist recently commented to me that hormone therapy takes MONTHS to settle down. I think it requires two or three successive psa test increases over a period of time to be classed as refractory, but I'm sure somebody else will clarify this. So no, it's certainly too early to say hormone therapy has stopped working already, although Bicalutamide seems a very sensible precaution to me, and even so, abiraterone is a hormone therapy which may come along later.

Docetaxel definitely isn't any fun, and mine was foreshortened, but it did reduce some pains, and I do not regret having it whatsoever. You can read my profile, I'm a similar age with similar horrible disease.

User

Posted 27 Feb 2019 at 23:23

The rise in PSA could be a result of the 5 zaps of RT to the bone mets. If that’s the case, it should drop again by the next test.

Don’t panic yet!

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

User

Posted 23 Mar 2019 at 00:04

Betty, if in doubt, call 111

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

User

Posted 23 Mar 2019 at 00:42

I would second what Lyn says. Call 111 or the number they gave you at Oncology. Better to be safe than sorry and they will not mind at all.

User

Posted 23 Mar 2019 at 07:52

If it starts coming back make sure you call asap. Hope things a better today.

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User

Posted 27 Feb 2019 at 22:21

I'm afraid I'm not an expert, but for me, groin pain is just a symptom of the disease.

User

Posted 27 Feb 2019 at 23:23

The rise in PSA could be a result of the 5 zaps of RT to the bone mets. If that’s the case, it should drop again by the next test.

Don’t panic yet!

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

User

Posted 18 Mar 2019 at 08:48

Hi there, firstly thanks to Lyn and Michael for your replies to my previous post. I did post thanks but these posts dont seem to have appeared. Perhaps i failed to hit the right button.

I’m apprehensive about getting latest PSA result tomorrow, in case it has risen again. Thinking ahead, is there anything reassuring (but realistic) i can say to OH if that’s the case? Do two consecutive rises constitute a ’trend’? Could there be possible reasons for this other than failure of first line HT? The main consultant is a man of few words.

Thank you to all on the forum. It’s helped me learn so much that the doctors don’t have time to explain.

Best wishes

Betty

User

Posted 20 Mar 2019 at 06:36

Well, the PSA has gone up - from 4.93 to 7. The doctor we saw previously said she was ‘concerned’ at the rise from 2.9 to 4.93 and therefore told OH to keep taking the bicalutamide. However, the doctor we saw yesterday said he was not concerned as the rise was so little that he would say the PSA is ‘stable’ (in the context of PSA of 1429 at diagnosis, I think). He told OH to stop taking the bicalutamide as it ‘muddied the water’. Who knows?
Chemotherapy to start on Friday.

Best wishes
Betty

User

Posted 22 Mar 2019 at 23:52

Hi, I think this should really be a new thread but not sure if that will cause delay at this time of night!
OH had first infusion of chemotherapy today. Up until now he’s been fine but is now experiencing quite severe pain mainly in his left shoulder, down his upper arm and up the left side of his neck. The infusion was into his left forearm. He does have mets on his shoulders. He was previously experiencing some pain in his left shoulder, which was alleviated by paracetamol + codeine and hot water bottle. Now, however, paracetamol and codeine are not suppressing the pain adequately and pressure of hot water bottle may even be making it worse, particularly on the collar bone.
Severe pain or tenderness (not at the site of the infusion itself) does not seem to be listed as a side effect in the leaflets given. Any advice please.
Thank you.
Betty

User

Posted 23 Mar 2019 at 00:04

Betty, if in doubt, call 111

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

User

Posted 23 Mar 2019 at 00:42

I would second what Lyn says. Call 111 or the number they gave you at Oncology. Better to be safe than sorry and they will not mind at all.

User

Posted 23 Mar 2019 at 01:22

Thanks for getting back to me Lyn. I called the chemo hotline who advised on pain relief. Let’s hope that helps.
Thanks again.
Betty

User

Posted 23 Mar 2019 at 01:26

Thanks Kita.

User

Posted 23 Mar 2019 at 07:10

Well, that was a long night. I had to get paramedics to come in the early hours as the pain was a ‘10’. They conferred with an out of hours doctor who sanctioned a combination of paracetamol, codeine and an upped dose of naproxen - which is all we have in the house. He’s still in pain this morning (about a ‘6’) So will be seeing an OOH GP to (hopefully) get some heavy duty pain relief for times of need.
OH thinks the pain wasn’t directly due to chemo, but due to the excessive time he was forced to spend sitting, fairly immobile, on uncomfortable chairs, waiting first for the chemo, then the chemo itself, then an hour and a half in the hospital pharmacy before the half hour drive home. That’s his theory anyway. He thinks the pain is mainly muscular. I’m worried it’s bone pain from the mets. At least his temperature is stable.
He’s in low spirits this morning as the unexpected extreme pain has shattered his confidence that he is coping with this.
It all feels a bit challenging today.
Best wishes
Betty

User

Posted 23 Mar 2019 at 07:52

If it starts coming back make sure you call asap. Hope things a better today.

User

Posted 23 Mar 2019 at 08:57

Thank you Francij1. He’s got an appt at 10:30 with ooh GP. Thank goodness.
BW
Betty

User

Posted 03 May 2019 at 08:02

Hello - quick (belated) update from me. OOH GP prescribed Oramorph but the bottle remains unopened as there has been no recurrence of such pain. He is now taking no pain killers at all which is remarkable considering he was swigging oramorph freely for back pain before diagnosis.
3rd infusion of docetaxel today (with prednisolone steroids). Also on three monthly injections of decapeptyl. No real problems with chemo so far. He is very active, somewhat volatile (due to steroids?) but not feeling too bad at all.
PSA is now 10, having risen steadily from a low of 2.9 when the hormone treatment first kicked in. The various consultants describe this rise as ‘stable’ - in the context of PSA of 1429 at diagnosis, I suppose.
Should we be worried by the rise in PSA, or is it too early and too insignificant to be meaningful? I’m aware it’s still early days even though the time pre-diagnosis seems a lifetime away.
I’m guessing we won’t know where we are until the end of the chemo. Meanwhile, we’re grateful to be back to relatively normal life.
Grateful for any comments on PSA etc.
Thanks
Best wishes
Betty

User

Posted 03 May 2019 at 09:45

It would normally be a concern to see PSA rising so early in the HT journey. However, it is known that sometimes the PSA rises during chemo, possibly antigen being produced as the cancer cells try to fight what they recognise as an attack.

Trust the doctors, they tend not to lie about these things.

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

User

Posted 03 May 2019 at 10:11

Thanks Lyn. I will try.
Best to all
Betty

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