Geoff Buttfield Posted February 2, 2012 Share Posted February 2, 2012 The title refers not only to the Ipswich Motorway works endured on a regular basis during biopsy etc, but also to the journey so far. The Numbers and Chronology(Updated 11 November 14)PSA COUNTS (ug/l)2/6 10 -28 5/ 7/10 -5010/ 8/10 -49 (D.T. 2.802 Mths, ADT Commenced 15/9/10, LUCRIN 3 Mth.) 4/10/10 -4129/11/10 - 3.7 T= 0.726/ 1/11 - 1.2 T= 0.925/ 3/11 - 0.962/ 5/11 - 0.83 (Commence RTx 9/5/11, 78gy, 8 weeks)3/ 8/11 - 0.1024/ 8/11 - 0.0815/10/11 - 0.078/12/11 - 0.0423/ 1/12 - 0.047/ 3/12 -<0.03 (Time to change pathology labs!) Testo-0.2nmol/L, Free Testo-1.1pmol/L (definitely castrate)21/ 5/12 - 0.0120/ 8/12 -<0.01 27/11/12 -<0.01. Testo-<0.5 nmol/L, SBHG-44nmol/L (Different Lab, Free T not calculated if T <0.5, But lower PSA assay) 8/ 3/13 -<0.01. Testo-<0.5nmol/L, SBHG-36nmol/L 7/ 6/13- 0.05. Testo-7.6nmol/L, SBHG-41nmol/L, Free T. 123pmol/L 8/ 7/13- 0.08. 8/ 8/13- 0.11. 12/9/13- 0.16. 21/10/13- 0.16. 5/12/13- 0.25. 23/ 1/14- 0.44. 25/ 3/14- 0.99. 24/ 4/14- 1.30 26/ 6/14- 3.0 29/ 8/14- 7.8 !!!!!!!! 18/ 9/14- 11 10/10/14- 9.5 Re-Commenced ADT (Firmagon) after test. 24/10/14- 3.9 7/11/14- 2.3 Biopsy12 out of 12,2x 3+3 30,50%6x 3+4 10,30,50,60,90,90%4x 4+3 25,70,80,100%Perineural Invasion Identified. My Story (An ongoing account)No Family History of PCa. No Symptoms, so no test until 50 (TOO LATE!!!!)2/6/10- Attended GP for general checkup at age 50.5. Got the callback 3 days later!!!!!Biopsy at Mater Urology 18/8/10. Advised 23/8/10 “Results not good”………SO-26/8/10- Bone Scan (clear), CT Scan (1or 2 Para-aortic lymph nodes slightly enlarged,Seminal Vesicle invasion, possible Bladder invasion)8/9/10- Official Diagnoses (given by registrar) Gleason 3+4=7, Locally Advanced. (Treatment Choices? “ADT+RTx or walk out the door”) All other Questions answered with “don’t know, everyones different” No staging information at this point. Given the APCC book. From that I put my staging at G3+4=7, T3b N1 M010/9/10- Rigid Cytoscopy No Bladder Involvement, Left UO protruding, no lesions15/9/10- Commence ADT, No induction therapy. ABOUT 3 WEEKS LATER THE MENTAL WHEELS FELL OFF!11/10/10- (finally) letter from urologist, Gleason 4+3=7, Significant Para-aortic adenopathy. Incurable. (still no staging)5/11/10- Having transferred for RTx treatment to Toowoomba,Radiation Oncologists Report-Stage T4, High Risk, Still no TMN. Possibility raised of no lymph node involvement.27/1/11- CT scan. ‘No change in size or volume of small para-aortic nodes’ in the face of a falling PSA. (A Glimmer of Hope! May be confined to pelvic area!) THE FIRST GOOD NEWS IN 6 MONTHS9/5/11 to 30/6/11-RTx, Have minor bowel changes, (still not the same, used to it now) no other major problems at this point.31/8/11- CT scan. 'Stable appearance of lymph nodes means they are probably not significant, as no apparent change' HOORAY!!15/9/11- Bone Density T=-1.5, Z=-0.92 (max) Diagnoses – Osteopaenia30/1/12-ADT Still going, Fatigue etc. ABOUT THIS TIME GOT 'USED TO' ADT, BUT ED REALLY SETS IN.12/3/12- Visit to Oncologist, I can, if I wish, finish ADT at this point.30/5/12- No major Bone Density changes. Continuing ADT. 15/12/12-Thats it for ADT, 27 months 'ON', Now that I've achieved 12 Mths PSA, <0.05, 6 Mths </=0.01 I hope the results are durable (The PCa, Not the ED!) 8/ 3/13- PSA & T both still undetectable, but mental state a vast improvement. Osteo (joints esp.) still an issue. 7/ 6/13-T rising, so is PSA! Researching 'Radiologist's Bounce' (and hoping!!!!) Back to monthly PSA's. 8/ 7/13- PSA rising. 8/ 8/13-3 rises in a row, That's ASTRO BF. DT not good. Bummer! 12/9/13-4 rises in a row! Doubling Time 2 months, that puts return to ADT early to mid 2014 21/10/13-PLATEAU ??! 8/11/13-CT & Bone Scan. Several prominent nodes (<1cm) in left para-aortic region, No evidence of skeletal metastases. 5/12/13- PSA up again! 9/ 1/14- Letter to my GP from Urologist at a major Brisbane Hospital "I would certainly keep him on the Hormonal Therapy at this stage" (I must conclude that his review of my case was less than thorough!) 23/ 1/14 -Another rise.... ADT again about October 2014 if I work to a max PSA of 10+/- 25/ 3/14 -Doubling time now seems about 1.8 months. So it looks like I will be 'celebrating' the 4th anniversary of diagnoses with a return to Hormone Therapy. 26/ 6/14 - Doubling time still around 2 months. My urologist advised in May that he would 'make arrangements' regarding a Gallium PSMA Pet Scan on my behalf while my PSA levels are up. 29/ 8/14 - Alarming PSA Numbers. Was expecting around 6.0 (up from 3.0) Got 7.8!! Unfortunately, now push has come to shove with the above-mentioned scan, I have been referred to another Urologist at a different hospital, the same week I should have been re-commencing ADT (PSA 10.0+/-). Will be commencing on the 3rd generation GnRH antagonist FIRMAGON [1 month] (No flare, 99% suppression by day 7) and switching back to Lucrin [3 month] at the 2 or 3 month mark. I am allowing another 4 weeks to see if I can get this scan organised before commencing, and then may have another month with PSA>2.0, which as far as I can gather is preferable for imaging. 29/ 9/14 - Saw another Urologist,Got referral to Wesley Medical Imaging for PSMA scan at my cost ($600.00) 10/10/14 -Got scan results and commenced ADT. Scan results "Impressive" and "unexpected" See - http://forums.jimjimjimjim.com/index.php?/topic/1054-gallium68-psma-prostate-specific-membrane-antigen-petct-scan/ 24/10/14- The PMI for Firmagon showed an average PSA reduction of 64% at week 2, and that's what I got! Link to comment Share on other sites More sharing options...
Admin Posted February 2, 2012 Share Posted February 2, 2012 Geoff Encouraging numbers - good to hear! I don't know where you got that <0.03 figure for undetectable. I wonder if you are talking about the lab measurement limit (which is 0.03 for one lab, 0.01 for another in Australia)? Medical oncologists like Dr Steven Strum call any value of 0.05 or less "undetectable", and use this definition to decide on treatment. So, they would consider you undetectable now, and that you have been undetectable since early December. Are you getting bone medications from your doctor? Jim Link to comment Share on other sites More sharing options...
Geoff Buttfield Posted February 2, 2012 Author Share Posted February 2, 2012 Jim The <0.03 figure is Qld Medical Laboratories lowest test level (as they have done all my tests so far, I believe I should stick with them at this point) Other labs may go lower, But unless I get there, no reason to change. At the moment my recommended bone meds are Caltrate Plus (Calcium 600mg+Vit D 400IU) {G.P.} plus Glucosamine 1500 {Rad.Onc.}. Unfortunately did not get a bone density done at the start,(before ADT) so cannot gauge decline, will get one at the 12 month mark and see then. As Bisophonates have a risk of Jaw Bone Necrosis, I'm not in a hurry to go there. Geoff Link to comment Share on other sites More sharing options...
Geoff Buttfield Posted March 12, 2012 Author Share Posted March 12, 2012 13/3/12 As I have updated my numbers,I now face the BIG QUESTION. To discontinue ADT now, or (my thoughts, and my GP's) continue for at least another 3 months, taking me 6 months past the accepted undetectable mark of 0.05. Much as I desire to return to whatever "normal" is going to be, Now that I have got used to ADT (took about 14 months!) I think it would be better to continue on at this point in the hope of a more durable remission (cure would be nice!) I would be interested in anyones thoughts on this, Geoff. Link to comment Share on other sites More sharing options...
Geoff Buttfield Posted May 6, 2014 Author Share Posted May 6, 2014 Updates added May 2014. Link to comment Share on other sites More sharing options...
Euan Posted May 7, 2014 Share Posted May 7, 2014 Geoff, I have read your update with interest. Deciding between continuous ADT and intermittent is not a easy choice. How well you cope is clearly a major factor. I just want to raise one factor which never seems to get a mention. The longer you stay on ADT the less likely your testicles will just spring back into action. Body builders have often made themselves permanently infertile as a result. I had 2 years continuous ADT and now 3 years later my testosterone has only recovered to 6. I am in my 70s and that is a factor against me. I am eligible for hormone replacement if I choose but the main reason for that would be for bone density and testosterone is not the main driver as you often read, it is oestrogen. So have your oestrogen levels checked. Oestrogen replacement is available on the PBS without restriction but comes with the risk on man boobs. Another point is that there is one bisphosphonate which does not have ONJ as a side effect but I forget its name for the moment. It is on the PBS but as with all bisphosphonates you must have osteoporosis to qualify. I took alendrenate tablets when on ADT. They were quite cheap at full price and the risk of ONJ is quite low. I had tooth extractions without issue. All the best with it, Euan Link to comment Share on other sites More sharing options...
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