A SUMMARY OF THE MONTHLY PHONE- IN CONFERENCE FRIDAY 27TH MAY 2016

[Popeye]

Jim was away in Sydney with a swag of other members representing our group at a meeting with Janssen, the suppliers of the drug Zytiga. As a result of this, Jim asked me to chair our phone in conference in his absence. We had no guest speaker at our gathering which made life a little easier for me as our talks would be based on a round table discussion among members. I had the feeling it might be a bit dull without a guest and members be reluctant to come forward and speak on issues. With this in mind I prepared some topics prior to the meeting just in case. I needn't have worried as right from the beginning we were off and running and I threw my cheat sheet into the bin. The meeting never ran out of steam and everyone contributed some great stuff for contemplation so much so that I decided to contribute this summary. I did not record any of our discussions so what I present here is from hurried notes and memory. It is subject to my interpretation and in some areas may be incomplete or inaccurate for which I apologise in advance.

I received 8 apologies (most of which were from the members attending the Janssen meeting).  There were 6 participants who took part in our meeting and I hope they were happy with the results of our gathering. The session began with a briefing by me as per my understanding of the meeting with Janssen being attended by the cream of our membership and with what little I knew of the nuts and bolts of that meeting I was only able to offer a broad assumption. Jim, I understand will be responding to members with a full report at some time in the future.

 

Two men gave a report on exercise programs they were attending. One man is participating in a study at St Lucia University that includes dietary analysis and different exercise regimes. He intends to post a report on the program when he is able.  However he stated that he might need assistance in getting the report ready for posting and has asked if any of the members would be able to assist. I can pass on contact details to any member willing to help out.

 

The second man is on an exercise program at Deakin University Burwood Campus Melbourne that is oriented specifically to prostate cancer patients.

 

In further talks on exercise programs and the relationship with the application of chemotherapy, the subject of a recent “Catalyst” program was raised. As can be seen in the Catalyst program there is a gym adjacent to the chemotherapy section where patients are encouraged to exercise straight after infusion of their chemo. This is believed to help increase blood flow to assist in the uptake of the chemotherapy drugs more effectively and improve the body's own immune system. Here is the link on Iview. this link

 

 It was also raised that jimjimjimjim had a guest speaker a couple of years ago during a phone in called Dr Prue Cormie. The minutes of that meeting can be found by clicking on this link.   Also an interesting video talk by Dr Prue Cormie can be found by clicking on this link.

[Edit - The Catalyst program featured Professor Rob Newton from Edith Cowan University in Perth.  Dr Prue Cormie was previously at Edith Cowan but is now at the Australian Catholic University, Melbourne.]

One man gave a report on his treatment involving a small trial using Lutetium 177 which is still ongoing. His initial thought was that about 10% patients have reported excellent results while he feels he has had moderate results with little side effects, mainly a sore throat and dry mouth as the radionuclide targets PSMA cells but also effects saliva glands.  An interesting issue caught my ear in this discussion, regarding access to results while on a trial. If my memory serves me correctly, it appears that patients taking part in a blind trial are not given access to any pathology test results while on the trial. This is something I have not considered before, but I can see the point in keeping this information secret during a trial of this sort. However it is something to consider for those looking for trials to volunteer for. Perhaps other members may be able to confirm or deny my limited knowledge on this matter, as for Lutetium 177 more can be read by clicking on this link.

 

A man gave a report on his experience with treatment using docetaxel and recommencement of ADT. His experiences were not good and included peripheral neuropathy particularly in legs ankles and feet, constipation, headaches, nausea and fatigue. This has taken 11 weeks to finally start to resolve since completing chemo. It has brought his PSA back down to an acceptable level though.

 

A man also reported he was diagnosed with radiation cystitis some time ago and experienced bleeding and urine blockages, similar to my experience in 2014. He also was treated with hyperbaric oxygen treatment in a decompression chamber but in his case the treatment was successful. I congratulated him and passed the comment that thanks to his report I can consider a 50-50 success rate in this treatment. A bit unfair from me I know but it was written in jest and I include it here to present as a successful case in the use of this treatment for radiation cystitis.

 

A man reported a rising PSA after intermittent ADT over the past 10 years since initial primary treatment. Recently he has been back on Lucrin but his PSA is doubling monthly. He was not looking forward to being advised to begin chemotherapy before being considered for enzalutimide or zytiga. After much discussion it was suggested that he should approach his GP, urologist or oncologist regarding this matter and perhaps a second or third opinion before any choice is made. The meeting concluded approx 1120 hrs.

Lee Gallagher (Popeye)

[Paul Edwards]

The man who is not looking  forward to chemotherapy before being considered for enzalutamide or zytiga may be interested in this clinical trial , which I'm on, and which gives access to zytiga pre chemo.

 

Popeye, I'm getting access to many of the results (PSA, full bloods) from pathology tests and from the CT and PET scans that are being done while I'm on the trial. I'm not getting any results that would indicate which arm of the trial that I'm on.  I'm not getting any of the data relating to the pharmakinetics (level of the different drugs in my body and the rate of absorption/dispersal of the drugs in my blood stream) or to the amount of circulating tumour cells. I know that tonymax is getting my PSA levels on a different trial that he is on but I don't know what else he is getting.

 

[Popeye]

Thanks Paul for your great information here. I will make sure the man involved has seen your input here. Also of interest is your experience regarding results of pathology being available to you during trials, that has eased my mind a little regarding that issue. Many thanks.

Lee (Popeye)