High PSA

[JohnC45]

I'm new to this site, so here's my story so far:

Two years ago (when I was 68) I lost my appetite and began losing weight - I went from 12 stone in April 2014 to about 10.5 stone over two or three months. My doctor did not start doing blood tests until June of that year and did not include a PSA test until July, after I had suggested it and whilst I had been suffering increased back pain. By that time my PSA was over 4,100 and my haemoglobin was down in the 90's. I was swiftly sent to the urology specialist, given the first of  a three monthly Triptorelin injections (which continue), sent for a biopsy and the day after checked myself in to A&E at the Western in Edinburgh.

They kept me in and I was flat on my back for a week until they could set up a planned spinal operation to remove most of two and part of two vertebrae and fit titanium rods. Apparently another two or three weeks and I would have been in a wheel-chair, even now. My Prostate Cancer had resulted in Metastatic Spinal Cord Compression (hence the operation and, of course the general spread) with the only good news being that it stayed Prostate Cancer wherever it was.

By the end of August 2014 my PSA was 0.1. In January 2015 it began to creep up and by the August 2015 it was 6.6 at which time I was given Bicaludimide. This was fairly ineffective and by November I moved on to Dexamethazone (PSA 9.2). This too did not seem to work (January PSA 41) and I started three weekly Chemotherapy (Predisolone with Dexamethasone the day before, on the day and the day after Chemo plus Metoclopramide continuously) in February (PSA 99.8). 

My latest bone scan shows widespread, small, hot spots and my PSA has bobbed up and down (mostly up) and is now 133.

Perhaps surprisingly I feel pretty good and am managing 10,000 steps most days (partially weather permitting). I am on various other drugs (Amitriptyline - for tingling in my feet and legs, Tamsulosin & Finasteride for assistance with urination, Alendrodic Acid for Osteopenia and Ferrous Fumarate to boost my haemoglobin levels which are still not up to normal although I have not needed any blood transfusions since just after my spinal surgery). I was also on low dosage Morphine (MST Continus) but I stopped it last week in case it was masking and pain from the hot spots - so far mostly imaginary twinges.

The oncology consultants will only give "months or years" type of prognosis, but at least it's not "weeks or months". I take comfort from the fact that I was relatively fit before the problems arose and feel pretty good (considering) even now.

One of the drawbacks of the Chemo is that I shouldn't travel too far from the Western - no cruises or travel abroad in case I catch something and/or am not able to get back to the Western. I've already had to be checked in to the Western with mild pneumonia and this delayed my next Chemo by a week.

[KevVardy]

blimey, thought i was bad. What amazing spirit you have. I have metastasis all over particularly L2. They are concerned about SCC with me. Been in bed last 3 or 4 days with what seems like nerve pain in right pelvis groin area and ache in shoulder and upper ribcage. Scans on Tuesday. I hope I can have your fortitude with what is to come. Not looking forward to it. I was diagnosed in July 2015 after going with hip/pelvis pain in April. 1st PSA was 92, my father died of te disease. I was inotially talked out of a psa test!! I am on prostap and was on bicalutimide but that has stopped now as was not effective. I am hoping they will try radium 223. Haven't had chemo and to be honest don't want it. Best wishes to you and thank you for showing us your courage and fortitude, really inspring. Take care.

[JohnC45 in reply to KevVardy]

Thanks foe your comments. I was originally worried about chemo, mainly because I had only heard about how poorly it made people - but none of the folk I had heard about were getting chemo for Prostate Cancer and, in my own experience, it's not been bad. 

I hope things go well with you - there do seem to be several options that can be tried. 

[telboy15]

Thanks for telling your story. I can only hope that you have some good time left bearing in mind your prognosis. My next door neighbour went through a similar history to you. As for myself; I have written elsewhere on HealthUnlocked. PSA of 5 in August 2015, Gleason of 8 (5+3); clear MRI, CT and bone scans. Had prostate removed by Da Vinci keyhole surgery 24 Nov 2015. Now PSA of 0.1 and doing fine (thankfully). At 75 years of age, I appreciate my prognosis now. I am sorry about your situation as I said above. Fact is that prostate cancer can show up in any man at any time.

Pity that there is no automatic screening system in place.

[maack1]

Hello johnC45,

Sorry to learn of your PC not diagnosed until far advanced in development.  You are an inspiration to others by your sharing with others this history of what you have had to go through since that diagnosis.  It appears your treating physicians are providing sufficient medications, though with metastasis and if available in Scotland, one of the newer medications Xtandi/enzaluatmide might help in knocking that PSA down, arresting some of the metastatic development.  I worked with a patient in Scotland and at the time became aware of on physician who appeared to have reasonable expertise in the treatment of advanced prostate cancer, though he resides and practices in Glasgow.  Should you ever want to consider an appointment with him to at least discuss your status and see if he has additional recommendations to your current treatment, here is his contact information:

Dr Robert J Jones

Senior Lecturer and Hon Consultant in Medical Oncology Beatson West of

Scotland Cancer Centre

1053 Great Western Road,

Glasgow,

G12 0YN.

Telephone: [phone]

Website: beatson.scot.nhs.uk/content/

Directions: beatson.scot.nhs.uk/content...

(Note: Patients require referral from their local treating physician.

The foregoing information is provided for that physician to arrange

referral)

[JohnC45 in reply to maack1]

Thanks for the comments and contact details. My consultant also seems pretty good and has already discussed moving on to Xtandi/enzalutamide, either instead of my sixth chemo session (I've just had my fourth) if there is no marked improvement by then - if there is improvement from the chemo I will probably keep on towards the original planned ten and then move to Xtandi/enzalutamide.

I think I am fortunate that I haven't had much of a reaction to the chemo I'm having - Docetaxel/Taxotere.

[maack1 in reply to JohnC45]

In the event you do experience side effects during your chemo, here is some info in this regard: tinyurl.com/3rlkuqx