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Alan Barlee's story - why Zytiga abiraterone on the PBS is vital


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I am a 71year-old married male, with children and grandchildren, and am deeply involved in a number of community projects.

My medical condition is advanced (Stage 4) prostate cancer (one of around 22,000 such men in Australia).

The Gleason 7 cancer imaged by fused PET-CT a few years ago confirmed metastases to both regional and distant lymph nodes.

My medical treatments to date have been RP (with apparently negative margins & nodes, but also with minimal PSA reduction). This was followed by active surveillance and then (at PSA of 33) by ADT3 (Zoladex, Cosudex & Dutas) as intermittent therapy - overall, treatments have successfully in controlling my disease for 10 years, in conjunction with diet, selected supplements and exercise. However, my PSA is now progressively rising, in spite of low testosterone.In this respect, (I am one of around 1500 such Australian men in this situation).

I am about to try degarelix (GNRH antagonist), and then transdermal estradiol, but I have little expectation of achieving more than a fleeting benefit with these older


Month and year of diagnosis. Example: June 2009

April 2003

Age at diagnosis. Example 61 years


PSA at diagnosis. Example: 7.7


Gleason score at diagnosis. (from biopsy) Examples: 7 OR 3+4


Biopsy details. Examples: Positive cores 7/12 (58%) OR (R: 4+5 75%, 4+5 75%, 4+5 95%, 4+3 20%, 3+4 15% L: -, -, -, -, -, 3+4 50%)

R: nil. L: 3+4 (20% in 1/6 cores)

Bone scan result at diagnosis. Examples: Clear OR Metastases in pelvis and lower spine


Lymph nodes at diagnosis. Examples: Clear OR CT scan shows 2 lymph nodes positive

Clear on CT

Capsular penetration (growth through prostate wall). Examples: None OR MRI shows probable extra capsular extension at left base in midline surrounding seminal vesicles and ejaculatory ducts

None on CT

Highest PSA before treatment. Example: 10.4


Initial treatment - surgery. Examples: Robotic prostatectomy OR open prostatectomy

Open RP (July 2003) - Gleason 4+3 to 3+4 in 25-30% of LHS of gland / negative surgical margins. No disease seen in seminal vesicles or in 10 resected pelvic lymph nodes. No urethrovesicle neoplasia or prostatic tissue seen on post-RP MRI-guided biopsy.

Lowest PSA after initial treatment. Example: 0.2

3.9-4.6 plateau for 12 m after RP

Testosterone after treatment. Examples: 6 nmol/L after 6 month s, 15 nmol/L after 18 months

Not tested after RP

Month and year of recurrence. Example: June 2012

July 2003 (after RP)

PSA at recurrence. Example: 2.7


Testosterone at recurrence. Example: 0.5 nmol/L

Not tested

Bone scan result at recurrence. Examples: Clear OR Metastases in pelvis and lower spine


Other scan result at recurrence. Examples: CT scan clear OR Pelvic MRI with IV contrast shows recurrence in prostate bed

Pelvic & abdominal CT - no enlarged pelvic or para-aortic lymph nodes 2 m after RP.

IV & oral contrast CT - 2 enlarged LH pelvic lymph nodes (19 mm) 18 m after RP.

Whole body PET-CT (F-18 FDG) scan with oral contrast - 6 metabolically active & enlarged lower LH peritoneal and pelvic nodes (20 mm) confirmed 3 yrs after RP .

Subsequent CT scans to Mar 2009 - stable lymphadenopathy ca 6 yrs after RP.

Recurrence treatment - hormone therapy. Examples: Zoladex + Cosudex continuous OR Nilutamide

ADT3 ( 3-monthly Zoladex + Cosudex + dutasteride - 3 on/off cycles of IADT

Recurrence treatment - other. Example: On trial of Zytiga (abiraterone acetate)

Consecutive PSA rises above 2 occurred too late for Aust. pre-chemo abiraterone and MDV3100 trials.

Current treatment status. Examples: Continuing ADT OR Monitoring PSA each 6 weeks

PSA now rising to 3.4 with T< 0.3 mmol/L. Previous ADT3 regime to be changed to modified ADT2, using monthly degarelix (LHRH antagonist) and daily Dutas, with monthly PSA testing.

If previous PSA and PSADT trends persist after 3 m, this treatment will be replaced with transdermal estradiol, pending TGA and PBAC approval of Zytiga (and Xtandi).

Last few PSA scores with dates. Example: PSA 0.04 Jul 2011, PSA 0.05 Sep 2011, PSA 0.07 Feb 2012, PSA 0.11 Jul 2012

PSA 29/2/12 2.1, PSA 16/4/2.7, PSA 31/5/12 3.0, PSA 16/8/12 3.4, PSA 24/9/12 4.0 (= PSADT 14.2 months - not yet too bad!)

Final paragraphs - anything else you wish to say

Radiation treatments are not feasible, and I am very reluctant to go to ketoconizole, docetaxel or carbazitaxel at this point, given the relative toxicities of these drugs.

In recent years I have been following the development, clinical trials and FDA registration of abiraterone/Zytiga (and of an even more recent and possibly complementary drug -MDV 3100/enzalutamide/Xtandi). Both these clearly have high efficacy as second-line hormone deprivation treatments following conventional ADT, either before or after chemotherapy, and compared with their less effective alternatives they have the major benefits of low and manageable toxicities and self-administration. The suppression of adrenal T in particular is a key technical benefit of Zytiga, as is increased life expectancy for the majority of men using it.

At a very personal level, managing prostate cancer is all about buying time as these great strides in PCa research continue to unfold. I still have much to share with my wife and my adult children, and especially with my young grandchildren (who have just lost

their father to melanoma). I am also planning to continue contributing to my community through Landcare, and to the wider world through my involvement with the Australian Greens.

As you can see, I hope to avoid or at least to defer the debilitating course of this disease for a number of years yet!

I do understand that these cancer drugs are expensive, and that the PBAC must balance the costs against the benefits in approving them for Australian patients. I can

only say that the benefits of keeping patients out of hospital and self-sufficient for as

long as possible, while retaining their practical and social skills and experience to benefit younger people and the wider community, both have high value, in spite of being difficult to measure. Hopefully, a working life of paying substantial taxes also helps to balance the financial ledger.

The PBS is a very Australian way of providing mutual help to the average person suffering from a serious disease to access otherwise unaffordable drugs, which can

extend the number of years he or she might expect to live while maintaining dignity

and a reasonable quality of life. Affordable costs of medication like Zytiga allow men like me to continue to play an active part in managing my disease at home. This is a preferable option to relying on the publicly-funded hospital system to administer treatments like chemotherapy and immunotherapy, and to deal with the severe side-effects of such treatments.

In particular, the use of Zytiga before moving to 'last-options' therapies means that expensive hospital treatment and premature in-patient and palliative care admissions can be significantly deferred - again saving public dollars. My wife and I are living on deferred annuities, converted from privately-funded superannuation when we both ceased paid work. We have enough to pay for private hospital insurance, and even to pay to import Dutas for personal-use addition to my ADT regime. However, short of selling our home we have no possible way of funding the use of Zytiga (and/or Xtandi) while these drugs are not yet on the PBS list.

(The initial and final paragraphs here duplicate an Individual submission I made today to the PBAC meeting to be held on 6-7 November 2012, which will hopefully recommend Zytiga (and maybe also fast-track Xtandi) for early PBS listing for resistant metastatic PCa, for use before as well as after chemotherapy drugs like Taxotere).

Date updated. Example 23 September 2012

6 October 2012

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