THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2019 SO THERE IS NO UPDATE.

Diagnoses, Treatment & Side Effects to Date (March 2012)

Diagnoses

• Initial Diagnoses: Acute Sciatica;
• Referred to a Neurosurgeon after 3 months treatment.
• After examination he arranged MRI & Blood Test.
• Result: 4 shadows base of spine' cause of Sciatic. PSA 126ug/L Most probably have Prostate Cancer Referred to Urologist
• DRE, PSA & Biopsy
• Result 14th. July 2008 aged 62yrs. PSA had risen to 138ug/L in 5 days,
• Metastatic Prostate Cancer; Stage IV T3 M1+,
• Gleeson Score 8 + 7
• Secondaries: Pelvis, Lumbar Spine, Thoracic Spine, R. Shoulder, Rib #01 R. side
• No Symptoms;

Note: PSA & DRE done every 12 - 24 months max as Dad had PC, did not die from it and elder brother has it and successfully treated.(Radiotherapy) Urologist said I had a very aggressive type of Prostate Cancer and that I should not beat my head against a brick wall as PC tests are not absolute, even the Biopsy depending on experience of Urologist may not be conclusive. PSA & DRE indicators only.

Treatment & Present Status

• Hormone Therapy, Zoladex Implant - quarterly, plus daily Anti androgen tablets 10 days at commencement prior to implant;
• Radiotherapy for Pain management; Feb/ Mar 09;
• Zometa infusion monthly;
• Arthritis Mgt: Methotrexate & Folic Acid (10/09 - 07/12); and
• Pain Mgt: Tramadol or Oxy-Contin
• Changed from Private to Public system April 2011;
• Increasing Bone Pain May - Aug 12: Series of tests and scans , soft tissues & heart all clear. 1 ne lesion left ribs, possibly 4 right ribs but not clearly defined.
• Commenced Fentanyl Patches 05/07/12
• Little or no Bone Pain (Magic)
• No more popping painkillers.1 in 3wks! (Fantastic)
• PSA 1.1

Note 1: 7 Zoladex Injections since commencement 30/07/08, latest one /07/12 Note 2: 11wks Androcur Nov, Dec 09

Note 3: 7 months Cosudex 03/10 with implants

Note 4: 10 monthly infusions Zometa, commenced 19/04/10 now out to 6wk intervals.

Side effects:

• Hot flushes;
• Chills (cold spells12)
• Loss of libido;
• Penile reduction;
• Sweats;
• Erectile Dysfunction;
• Extreme tiredness & fatigue;
• Lethargy;
• Cognitive Issues; (Lack of concentration, decreased mental sharpness, short term memory loss.)
• Nausea;
• No stamina;
• Weight fluctuation;
• Muscle degradation;
• Depression; (Minor, no treatment or visits to Drs.)
• Mood Swings; (Temperament)
• No strength;
• Loss of Income;
• Demeaned by Insurance Company;
• Loss of neat writing ability;
• Psoriatic Arthritis (hands);
• Osteoarthritis (Lower Spine, Knees & Hips); and
• Osteoporosis.

Future: Where is my Crystal Ball and the Specialists

Contact Details: 07 4613 6974 Mob 0407 927 060

DHA 14th. August 2012 V3

ADT is still working but perhaps not as effectively as previous. Recent NBS clarivied a few more secandries on my ribs but nothing startling. CT Scan for Chest, Abdomain All clear. My Med Onc beleives I'm now CRPC and should consider starting Chemo in a couple of months. Went for a secand opinion a was told most unlikely that I was moving into CRPC, possibly another 12 months!!!!!!!

My Bone Pain is now under control which is magic. Saw a Palliative Care Consultant about 9months ago, which was the best decision so far of my journry. Pain is being managed by Fentanyl 50 patches. changed evry 3 days. Take occaisional break through 20mg Oxy Norm.

Side Effects and Impacts.

Please note that I have found that some Specialists are genuinly interested in side effects others are not. They all should be as they are working for you. I have changed Specialists!! Never mind that now but here is my list. Happy Reading.

By the way Lenard Cohen was great.. Hoep I'll be as active as he was when I'm 80yrs young.

David HA Nov. 2013

Side Effects of Treatment (ADT) & Impact;

1: Fatigue, Extreme Tiredness;

2: Muscle degradation;

3: Cognitive Issues;

4: Cold Spasms/ tremors; av1/ month

5: Hot Flushes; 4-6/ day

6: Loss of Libido;

7: Erectile Dysfunction;

8: Psoriatic Arthritis (hands);

9: Osteoarthritis (Lower Spine, Knees & Hips);

10: Osteoporosis;

11: Nausea (minor);

12: Weight Loss;

13: Hoarse Voice;

14: Penile reduction;

15: Depression/ Anxiety; (mild)

16; Urination issue;

Impact

a: Unable to Work/ Loss of Income; 1, 2, 3, 14 = reduction in overall lifestyle.

b: Unable to walk one of my dogs; 2, 9

c: takes about 2 - 3hrs to hover & mob the floors; 1, 2

d: Some days have to sit down after a 30' walk; 1, 2

e: Unable to go swimming / surfing; 1, 2

f: Unable to do heavy gardening tasks, split logs, mow the grass; 2

g: Hill walking; 1, 2

h: Drive long distance; 1, 3

i: Clean the car; 1, 2

j: Hold extended conversations; 3, 14

k: Stand for periods of time; 1,2, 10

l: Concentrate for short periods, let alone longer periods; 1, 3

m: Unable to Open a twist top, bottle of wine; 2

n: Hands lock together, shaking hands, clenching fist; 8

o: Sleep interruption, self & wife; 4, 5

p: Personal Relationship; 3, 6, 7,14, 15

q: Mood swings, irritable, confidence; 3,15

r: Increased frequency during day; 16

#1 is by far the worst. Impacts on everything!

Commenced Chemotherapy 22 Oct 14

Had first bout of Severe Chest Pain: Scale 7 - 8 Max; 4 -5 Av; 3rd. Nov. lasted about 3hrs middle of the night. Since then have experienced 16 bouts of chest pain the longest lasting 13hrs.* ranging from very mild to severe.

06/11/14; GP felt that that I had inflamed ligaments where Ribs join sternum.

12/11/14 Had ECG, immediately prior to 2nd. Chemo infusion. ECG Result Clear.

13/11/14 03.00hrs * Severe chest pain. Following MO & Cancer Nurse instructions called Ambulance. In ED by 03.45hrs Given 2 morphine shots by Paramedics. When in ED given 100ml fentanyl and 20mg endone over 3.5hrs pain not controlled. 2 ECGs 2 blood counts Chest X-ray. Cardiac and lungs All Clear and Good.

13/11/14 07.30hrs transferred to day ward. 3rd ECG and bloodcount taken about 10.00hrs Given another 20mg of endone. pain still not controlled, spasms not so severe. ECG and Bloods ok. Discharged 12.30hrs. Spasms finally abaded by 16.00hrs.

Cause of PAIN???!!! Not specified! Possible flair! Referred pain New secaodry in sternum. If pain persists in severe mode report back to Hospital Oncology Unit.

Pain has continued intermittently through till 24//11/14. Very mild to moderate. Will try and arrange for high resolution scans. (PET/MRI or Sodium Fluoride PET.) Till next Time. Good health and Travel Safe David Abrahams

This time last year I was in the middle of chemotherapy. Owing to side - effects (mainly peripheral nueropathy and tiredness) the medical oncologist stopped the programme after after 6 infusions. (last infusion beginning March 2015. Still suffer from the peripheral neuropathy. When having a break post chemo walking along a beach at Yamba Northen NSW when my left leg suddenly gave way and I hit the deck (fortunately sand) with a thump. I was stunned and winded & my my wife thought I had a heart attack. She tried to move me a bit but no success and was just calling triple zero when a wave washed over me. That woke me up very quickly & I quickly stood up. Like a drowned rat covered in sand. We then had a 30' stiff legged walk back to the lodgings. Left leg gave way a second time but as my wife was walking beside me I was able to grab her shoulder. Has not recurred. Was very lucky as there was steep concrete steps down to the beach near where we were staying.

Another chap in the support group had a similar experience as did a another classmate at hydro therapy where I go twice a week for 60'. The lady was having chemotherapy for breast cancer. All 3 of us had doxecyle.

Changed from Zometa to Xgeva mid year. Continuing on with Zoladex every 3 months since finished chemo.

Progress Report January 2016 - The Battle Intensifies: SBD

PSA continues to rise slowly. 4.1ug/L to 5.0ug/L (19/12/15) in 6wks.

Weight Loss: 1.5 - 2.5Kgs lost in 6wks, depending on which Hospital scales one believes. (nor am I having Maggie Beer or Nigella Lawson specialty diets!!!)

Have been re tattooed for radiotherapy which is due to commence on Tues 5th Jan 2016. L3 and Sacrum. Only able to have small dose, 20rad, which may or may not be beneficial, according to the Radiologist owing to the small dosage*. (had 2x40 rad doses in Feb/ Mar 2009.)

Ga68 PSMA PET-CT Scan conducted 16 Dec 2015

Summary of Findings:

Ongoing intense PSMA uptake in the enlarged prostate! Has not been enlarged before)

Active skeletal metastases in the sacrum, L3 and fifth posterior rib with ongoing intense PSMA uptake.

Mediastinal, retorocural and para-aortic lymph nodes demonstrate C, indicative of nodal metastases (despite the fact that these lymph nodes are not enlarged by CT size criteria). 3 are in the Abdomen, para-aortic region. One in the Thorax near T7 and a fifth on right side of abdomen.

Due to commence Abiraterone (Zytiga) on 4th February, which may or may not work.

Happy New Year and Improved or at Least Steady Health and Prosperity throughout 2016 and way beyond to All Readers.

"Slainte Mhath"

David Abrahams, Toowoomba,Qld.

*One wonders if it is worthwhile having this additional Radiotherapy. Both my Palliative Care Consultant and my Medical Oncologist feel it could be worthwhile. In for penny in for a pound!!!!! But I have to wear the side-effects they do not!

Progress Report February 2017 - The Battle Continues: SBD

Apologies for the delayed update, cannot believe 12 months plus, have passed since I did my last update.

How time flies when you are having fun!

I ended my last update wondering whether it would be beneficial having some more radiotherapy to L3 and Sacrum. Both my Medical and Radiation Oncologists felt it would beneficial.

In itself the radiotherapy was ok but it did nothing to help minimise bone pain. In fact I had to increase my fentanyl patch size from >50 - 75mcg/hr. To make matters worse I ended up with Radiation Colitis and having 8 days in St Andrews. Unfortunately not the town that carries that name and is the Golfing Capital of the world, (that is if you're a golf fanatic, which I'm not.) in Bonnie Scotland, but a Hospital in Toowoomba.

Needless to say and fortunately, I do not have to see either of the fore mentioned Oncologists! My Palliative Care Consultant and GP now manage my ailments!

October 2016, commenced participation in the following trial run by the Dept. Urology Princess Alexandra Hospital Brisbane Qld. A Novel Liver Targeted Testosterone Therapy for Sarcopenia in Androgen Deprived Men with Prostate Cancer - A Blinded Randomized Controlled Trial. Requirement: take 40mg oral testosterone daily (3x13.3mg/ day) for 6 months or a placebo. Had a whole body Bone Densitometry scan at commencement of trial and will have another at trials end.

Medication/ Treatment: Zoladex implant every 3 months. Xgeva injection every 6wks. Fentanyl patches for pain management.

During the past year (14 months) my PSA has fluctuated from a low of 3.9ug/L to a high of 6.1ug/L (23rd Feb) with my Testosterone going from <0.5L to <0.3L

Bone pain is slowly increasing: Lower spine, hips and pelvis predominantly left side and femur. To keep the pain tolerable without use of break through tablets (Oxy-norm 20mg) patch size has been increase gradually throughout the past year from >50 - 100mcg/hr.

In addition the peripheral neuropathy in my feet has recently started to get worse (chemo side-effect), increasing fatigue and weight loss. Now 68kg.

The good news is that I still enjoy my single malt and good red wine. Walk the dogs most days, 20 - 40min; 2hrs of hydro therapy & 60' of social bowls/ week.

To close a very, very belated Happy New Year and Improved or at Least Steady Health and Prosperity throughout 2017 and way beyond to All Readers.

"Slainte Mhath"

David Abrahams, Toowoomba, Qld. 03/03/17

Just 6wks away from my ten year anniversary of this "interesting journey" which has had a major impact on my own journey on planet earth.

Overview

Initial Diagnoses and Treatment 2008

Initial Diagnoses was Acute Sciatica however after 3 months of unsuccessful treatment refereed to a Neurosurgeon, who arranged MRI & Blood Test.

Result: 4 shadows base of spine' cause of Sciatic pain. PSA 126ug/L Most probably have Prostate Cancer Referred to Urologist. Further test etc including a biopsy.

Result 14th. July 2008 (age 62 years) PSA had risen to 138ug/L in 5 days, Advanced Metastatic Prostate Cancer; Stage IV T3 M1+, Gleason Score 8 + 7

Secondaries: Right side Pelvis, Lumbar Spine, Thoracic Spine, R. Shoulder, Rib #01 R. side

No Symptoms;

Treatment: Hormone Therapy, Zoladex Implant - quarterly, plus daily Anti androgen tablets (Cosudex) 10 days at commencement; once cancer under control intermittent therapy. Radiotherapy for Pain management; Feb/ Mar 09; Pelvis and Right shoulder. Zometa infusion commenced monthly in Jan 2010; Pain Management partially controlled with Tramadol, Methotrexate & Folic Acid.

Present

Have been on a 12 month hormone therapy holiday with my last Zoladex implant in March 2017. PSA fluctuating between 4 and 8ug/L, testosterone <.3L to <.5L, bone pain under control with the use of 100mcg/hr Fentanyl patches & 2x5mg/ day of Targin.

During a Toowoomba PC Support Group meeting in September last year the guest speaker a medical oncologist, mentioned as part of her discussion that 2% of men with advanced metastatic prostate cancer, who still have their prostate and have had Chemotherapy, radiotherapy and hormone therapy may get a secondary prostate cancer which is commonly picked up by having growth in ones prostate. This type of PC principally impacts the victim's bowel and urinary systems.

In 2016 I was in Hospital for 8 days, with a bowel problem which was not specifically diagnosed, perhaps radiation colitis or ulcerated colitis, who knows! During mid 2017 I had bladder problems which resulted in frequent trips to the loo, averaging one an hour with normal to weak flow and occasional dribble, caused by an enlarged prostate pressing on my urethra. The end result was having an indwelling Suprapubic Catheter (SPC) fitted. Short term I had blocked catheter problems (unbelievable pain and extremely high blood pressure) bladder infections and urinary tract infection, which resulted in couple of trips to the Base Hospital Emergency Department. Touch wood things have settled down now and only take anti-biotics for 3 days when the SPC is changed which is every 6wks. A Scotsman has to be very careful when wearing his kilt and having an SPC!!!!!!!!!!!!!!!!!!!!

In mid-February 2018 my Palliative Care Consultant and GP. after reading applicant criteria for the national Lutetium 177- PSMA Trial felt that I could be a suitable candidate. Unfortunately this was not to be case as the incumbent had to have had 3 rising PSA over 20ug/L (I had two) and become unresponsive to either of the 2 new super hormone therapy drugs, namely Xtandi (Enzalutamide) or Zytiga (Abiraterone).

Clearer patient guidelines are obviously required as we had a "partially" wasted trip down to Brisbane and the trial co-ordinater remarked that they could not understand why they had so many applicants!

In a 10wk period from January to April 2018 my PSA more than doubled from a low of 13ug/L to a high of 28ug/L and testosterone from 0.5 - 1.2 Prior to attending the Lutetium 177- PSMA Trial acceptance interview the trial Supervisor recommended that I start immediately on Firmagon, which was done on the 28th. March (2X 60mg) and my 2nd on 27th. May.

"Partially" wasted trip, the Oncologist in charge of the Lu177 trail during discussions asked my wife and myself, if we would be interested in having him (Sr Medical Oncologist) look after my cancer care, which after some discussion we agreed. Would necessitate 6wkly visits to Brisbane, but should the travel become too onerous he would refer me back to the Base Hospital Oncology Unit.

Results from my latest CT and NBS taken on 17th. April are as follows: Boney Metastases' were wide spread, "too numerous to count" in sacral, lumbar and thoracic spine and across my ribs with continued activity to the right shoulder, sacrum and pelvis, plus new spots in right arm and left side of pelvis. Two Lymph Nodes are clearly metastasised, lower pretracheal and the para-aortic retroperitoneal measuring over 11.4mm and 9.6mm on the short axis.

To close the principle soft tissue organs appear to remain clear and my PSA has fallen back to 15ug/L 24th. April and commenced Xtandi 17th. April. Still enjoying single malt good red wine, and our 4 magic grandchildren. Exercise regime is much the same daily walks, occasional resistance training and hydro- therapy once or twice a week, albeit a wee bit slower. The only noticeable side-effect to date is greater fatigue. Early June will see a return visit to the RBWH and a switch back to Zoladex.

If any members have had major hassles from Xtandi or a SPC please give us a call. Contact details in member section.

SlangeVar

David

David's e-mail address is: davidhabrahams46 AT gmail.com (replace "AT" with "@")

NOTE: David has not updated his story for more than 15 months, so you may not receive any response from him.