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High PSA nearly 6000 at diagnosis.

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User
Posted 23 Nov 2018 at 13:00

Diagnosed with APc August 2018. At diagnosis PSA presented as 5806. Two months Degarelix, now switched to Prostap, at same time chemotherapy which has combined to reduce PSA to 34.9 at 7th November. Wondering if such a very high PSA at diagnosis impacts on future prospects of managing APC. Generally feeling well if just a little lacking in energy. 

User
Posted 23 Nov 2018 at 16:56
Great news on your fantastic PSA reduction, and no your not a record holder as “over 13000” has been recorded!!
And just for info I started in Jan/17 on 1547 and got mine down to 94. Gone back up now but still feeling ok. Click on my avatar for further details.
Keep the Faith
J..
User
Posted 23 Nov 2018 at 17:07
Sorry you don’t get the Gold Medal, Dai.

Maybe you’ll get a loser’s medal with f*** all PSA quite soon! 😉

Cheers, John
User
Posted 23 Nov 2018 at 17:15
We have a couple of members diagnosed reasonably recently who had PSA around 6000. You could look for Trevor_Boothe's threads - he was the one who had PSA of 13,000 and he lived for about 5 years but did have other medical conditions.

The highest PSA our urologist has ever seen was 160,000
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Sep 2019 at 18:19

Thanks for that Valleyboy. 


We seem to be in the minority with high PSA so good to know of the options. My oncologist is so good and positive that I trust her advice totally so hopefully she’ll get it sorted.


david

User
Posted 04 Oct 2019 at 00:40

DBlue,  Do take care.  Hope things are going better for you.  The Tempest

Kathleen in Pennsylvania

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User
Posted 23 Nov 2018 at 16:14
DBlue, I think the high initial PSA is worrying, but much more important will be the nadir you reach after the chemo. I've read of men who have even shown undetectable PSA after treatment like yours. Have faith! BTW, I think the weariness will probably get worse before it gets better, but you can expect recovery from this, even if you find you are on HT for a long time.

Good Luck

AC
User
Posted 23 Nov 2018 at 16:38
Hi Blue,

I wonder if you are a world-record holder with that figure?

I am not sure how astronomic PSA such as your initial score correlates exactly to future outcomes. Others here will no doubt comment.

But anyway, great news that your treatment plan is obviously working, and I wish you all the best for the future.

Cheers, John
User
Posted 23 Nov 2018 at 16:56
Great news on your fantastic PSA reduction, and no your not a record holder as “over 13000” has been recorded!!
And just for info I started in Jan/17 on 1547 and got mine down to 94. Gone back up now but still feeling ok. Click on my avatar for further details.
Keep the Faith
J..
User
Posted 23 Nov 2018 at 16:56

AC


Thanks for your comments. This is all still a new experience for me but I was amazed after just one month on Degarelix my PSA dropped to around 1600. Would have liked to have kept with it but my Oncologist decided to switch me to Prostap. More convenient as only 3 monthly injections (for life apparently). The team treating me have been brilliant so would trust them to keep up the progress. 


 


Thanks


David

User
Posted 23 Nov 2018 at 17:05

Thanks guys for the encouragement. Next appointment with my oncologist is December 5th. Hopefully PSA still on a downward trend. Genuinely thought that my initial PSA was out of site. Amazing I don't have some sort of record high. 


 


David

User
Posted 23 Nov 2018 at 17:07
Sorry you don’t get the Gold Medal, Dai.

Maybe you’ll get a loser’s medal with f*** all PSA quite soon! 😉

Cheers, John
User
Posted 23 Nov 2018 at 17:15
We have a couple of members diagnosed reasonably recently who had PSA around 6000. You could look for Trevor_Boothe's threads - he was the one who had PSA of 13,000 and he lived for about 5 years but did have other medical conditions.

The highest PSA our urologist has ever seen was 160,000
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Jan 2019 at 13:59

Not posted anything for a while because still feel much of a newbie on this ’journey’, so to speak and really don’t think I could add anything to all the knowledge you guys and your carers come up with. However, since my first post have had five cycles of chemo (docetaxel) together with initially degarelix but now prostap. PSA now down to 17.4 (from initial 5806) which have to put down to fantastic care and treatment from Queen’s Hospital, Burton on Trent. they insisted on early chemo within a month of diagnosis which possibly made all the difference. Home and diet regime drastically changed and supervised by my good lady who like all the carers on this forum supports and encourages constantly. Chemo has been fine, few side effects just a bit of hair thinning, the expected tiredness and annoyingly tingling and numb fingers. All in all feel very fortunate compared to some but my problem because of this is that I don’t think I have come to terms with having PCa which puts me almost in denial. I know full well that sometime in the future it will get personal and nasty between me and the beast and hope to be strong enough to handle it. 


Good luck and best wishes for 2019 to all you guys and will continue to read your posts and learn.


David


 


 

User
Posted 01 Jan 2019 at 16:45
David, very good progress. Is the PSA still coming down? I take it you have at least one more cycle to complete? No reason why more should not follow if every cycle brings further progress. I'd looking for a single figure nadir, but you may not be so lucky. In any event, lots of hope for your future based on treatment so far!

AC
User
Posted 01 Jan 2019 at 16:57

Hi AC


yep, PSA has dropped every time so far following start of chemo. Not so spectacular now, obviously. My 6th chemo cycle due 17th Jan so hoping for maybe sneeking to single figures, who knows. Then just the Prostap injections from Feb and meetings with Onco and more scans.  Hope you get to single figures yourself.


 


David

User
Posted 29 May 2019 at 12:04
Quick update. For some reason can’t update profile despite several attempts. Just back from review meeting with Oncologist. Bloods ok, Testosterone still at <0.1 but PSA is up to 63. Really disappointed after dramatic six months drop from 5806 at dx last August to 6.6 in March. Oncologist said not to worry at moment as such a rise can happen especially within a couple of weeks from last Prostap. Next meeting in eight weeks. With Testosterone so low could this mean I’m castrate resistant already?

David
User
Posted 29 May 2019 at 20:31
It could be but it is also possible that you had a random non-functioning injection - was it injected in the same place as usual, by the same person? Did it feel as it normally does? There have been recorded incidents of injections failing due to incorrect storage, incorrect placement, missing the muscle, being given a 1 month dose rather than 3 month, etc. Have you taken any other medication / supplements recently (prescribed or otherwise) that could have interfered with the hormone injection?

If any of the above, the PSA should drop again with the next injection so I can see why the onco wants to wait until after that.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 May 2019 at 22:16
Lyn
Because my Testosterone was maintained at <0.1 as previously, I assumed the Prostap was doing it’s job. Injection 3 monthly by same nurse in same GP surgery into upper arm alternately for each injection. Always sourced from same pharmacy and was definitely 3 month dose. Injection felt the same as usual.
Next meeting with oncologist will actually be before the next injection is due so will be interesting to see the PSA at that time. Meanwhile will take oncologist advice until then and not worry too much.

Thanks
David
User
Posted 25 Jul 2019 at 14:23

Quick update. Meeting with oncologist yesterday. PSA up again, now 500. After end of chemo in January was 10.9 then 6.6 in March. Then on the rise to 63 in May and now up again. This is worrying and unexpected. Oncologist has requested new bone scan and CT scan then review meeting in just three weeks time. Nurse said plenty of things in the cupboard so not get too worked up about it. 


Any thoughts on where treatment might go from here?


Everything else worked out well on blood tests and apart from tiredness and occasional back pain, feel fine, so confused as to what’s going on. 


Also updated profile but with no success, doing something wrong I expect. 


David

User
Posted 25 Jul 2019 at 16:18
Hi David - your doctor may suggest 2nd round hormone treatment to you now (arbiraterone or enzalutamide). Lots of men on the site have taken one of these. Hope your review in 3 weeks is useful.
User
Posted 25 Jul 2019 at 17:02
Hi sallyyy
Thanks for reply.
Probably an obvious question but how do they differ from Prostap that I currently have.

Thanks
David
User
Posted 18 Sep 2019 at 15:47

Update after meeting with Oncologist today. Not what I was hoping for especially after two weeks in hospital to treat the sacral lumber compression that I stupidly ignored for a week or so. Five palliative fractions of radiotherapy have eased it all but bowel and bladder performance just a little compromised. In fact now have a catheter fitted. Well latest PSA has risen to 3180 with my bone scan indicating more spread to bones. Oncologist being really positive which has helped me handle it. Now on to aberitone with cabazitaxel chemo in locker for time being. Not coping well with tiredness/fatigue but determined to adopt a serious exercise regime. Next meeting in two weeks time.


david

User
Posted 18 Sep 2019 at 15:59

David,


Check for a local prostate cancer support group. Many of them run weekly exercise classes cheaply or for free. It is the main way to combat tiredness.


Find a local support group


Wishing you the best for your new treatment.

User
Posted 18 Sep 2019 at 16:38

Thanks Andy. Good plan. Will search one out.


David


 


 

User
Posted 18 Sep 2019 at 17:50
David
Obviously we re all different but since I presented with a PSA of 1547 in Feb 2017my treatment regime has been—
Immediate
Degaralix then Prostap/3 hormone injections.
17 infusions of chemo—Docetaxel and/or Cabazitaxel.
2 months on Abiraterone
2 months on Enzalutamide.
6 x infusions of Zometa bone hardener.
Now awaiting trials and/or private treatment possibly Lutetium 177.
So as you can see there are plenty of options for those of us with high PSA. Most of which unfortunately result in fatigue and tiredness.
Let’s just hope they can sort you out soon.
Keep the Faith.
J.
User
Posted 18 Sep 2019 at 18:19

Thanks for that Valleyboy. 


We seem to be in the minority with high PSA so good to know of the options. My oncologist is so good and positive that I trust her advice totally so hopefully she’ll get it sorted.


david

User
Posted 04 Oct 2019 at 00:40

DBlue,  Do take care.  Hope things are going better for you.  The Tempest

Kathleen in Pennsylvania

User
Posted 06 Oct 2019 at 12:28

Well two weeks on Zytiga and my bloods came back ok so carrying on for time being. PSA has stabilised a bit from it’s meteoric rise, now up slightly to 3480 and  Oncologist not too concerned as early stage on Zytiga. Next review in two weeks.


more annoying is the ongoing Caude Equinas syndrome business. Still numb in nether regions, still with catheter because bladder being very uncooperative and still fatigued. Made worse because forced myself to go for a walk to get some exercise and managed to strain a muscle in my groin so semi laid up again. Think there needs to be more awareness of Caude Equinas as it has similar outcomes to SCC but I’d never heard about it. 


Anyway, onwards and upwards.


David

 
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