Men with advanced prostate cancer discuss Anandron, Alpharadin, Xofigo, Xtandi and Zytiga June 2014

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Advanced Prostate Cancer monthly phone-in meeting Minutes 27 June 2014 

Courtesy of Paul Hobson

The Minutes of the phone-in meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice.

There were 4 apologies and 13 participants in the teleconference.

The Chairman, Dr Bruce Kynaston, was congratulated on being awarded the 2014 PCFA Research Award.

Xofigo (Radium 223, Alpharadin) 

Man A reported that he had been accepted for a clinical trial of Xofigo (Radium 223, Alpharadin) at St Vincent’s Hospital, Darlinghurst, NSW.  Copies of all his previous bone scans and his blood tests had been sent down to Sydney electronically from Queensland.  He was very impressed with the professionalism of Professor Richard Epstein and his team.  He still hadn’t got the documentation from the trial.

Man B said that he asked at the Princess Alexandra Hospital in Brisbane about clinical trials for Xofigo.   Dr Damien Thomson had expressed concern about the side effects of Xofigo, in particular damage to the bone marrow.

Chairman Bruce advised that the radiation emitted by Xofigo was Alpha particles which did little damage, particularly when compared to the older radiopharmaceuticals previously used, such as Strontium. which emitted Beta particles.

Chairman Bruce advised that he would speak to Dr Thomson about the information that was being given out to patients  at the PA Hospital about Xofigo.

Man B asked whether bone marrow repairs quickly.  Chairman Bruce advised that that bone marrow had a limited tolerance to radiation.  After this tolerance was reached bone marrow would not repair.  Man C commented that the medical literature suggested that damage to bone marrow from Xofigo was a minimal concern.

Man D advised that he had made enquiries to Radiology Queensland about clinical trials with Xofigo and was told that all trials were finished.   Man C said that there were 2 current trials in other states that were mentioned in the forum.

Man E advised there will be another clinical trial with Xofigo at the Royal Melbourne Hospital in 2 or 3 month’s time.

Anandron  Side Effects

Man F asked whether anyone else had experience with Anandron (nilutamide) and its side effects.  He had 3 metastases – 2 in lymph nodes and one in the pelvic bone.  Other than a rising PSA, he had no symptoms.  Until recently he had been on 6 monthly Eligard injections plus Cosudex and Avodart.  His oncologist has changed this so that he remained on the 6 monthly Eligard injections but replaced the Cosudex and Avodart with Anandron.  The Anandron was affecting his eyesight. 

Bruce Kynaston queried whether the problems with eyesight could be age-related.

Man C replied that vision changes (such as difficulty seeing when moving into the dark or light, changes in color vision) were a recognised side effect of Anandron. 

Man G said that he had been placed on Anandron when his PSA was rising.  The problem with light was a side effect.  He had to put on sunglasses whenever he went outside the house.  Anandron didn’t reduce his PSA but slowed its rise for 6-18 months. He did not experience any other side effects.

Man C had also been on Anandron and his sunlight intolerance experience was similar to that of Man G.  Man C also commented on the phenomenon of anti-androgen withdrawal. Adding the anti-androgen Anandron (in the context of Zoladex and prechemo  Zytiga) failed to arrest his rising PSA, but, eliminating the anti –androgen immediately produced an extended and continuing PSA decline. In advanced prostate cancer, traditional anti-androgens are known to often transition to becoming a promoter rather than an inhibitor.  

Advanced Prostate Cancer Pack

There was discussion about the PCFA’s newly released pack on Advanced Prostate Cancer.

Most men had not yet had the opportunity to read it in detail. 

Man H said that he had still not received his copy. He was advised that there were still about 15 which had yet to be posted.

Man I queried the accuracy of the statement in Section 4 of the pack - that the taking of Zoladex and Cosudex together over a long period was not recommended as it accelerated side effects. 

Man C said that the Pack doesn’t include information on the latest drugs.  Jim is going to change the website to include information that isn’t covered in the Pack, as well as updates.

Man G said that the Pack was good on the background to advanced prostate cancer but was way behind on treatment – there was less information in the Pack than in the previous 2009 book.

Chairman Bruce said that the process of checking whether statements in the Pack were supported by evidence acceptable to Cancer Council Australia caused delay.

Man G said PCFA had dropped the ball so far as the latest evidence-based drugs were concerned.

Man C said that PCFA shouldn’t limit the Pack to evidence accepted by the TGA and PBS in Australia but should look at world evidence.  There were plenty of stage 3 trials overseas regarding the new drugs.   New drugs which had been approved by the US FDA and in Europe barely got a mention.

Chairman Bruce explained that there was a difference in evidentiary standards.  The concept of evidence in science was different from the concept of evidence in law.  For there to be scientific evidence, one proof is not enough – the results need to be repeated in further trials.

PLATO trial

Man G said that he had been accepted for, and commenced on, the PLATO trial which was a trial involving Xtandi (enzalutamide).

In Stage 1 everybody gets Xtandi.  In Stage 2 participants are randomised into 2 groups: one group gets Xtandi plus Zytiga (abiraterone) and the other gets Xtandi plus a placebo.

He began taking Xtandi on 18 June.  In the previous fortnight he had constant tumour pain.  These disappeared after he took the Xtandi only to come back the following day.  However since then he has been pain free for more a week so the Xtandi is doing something.  He had a PSA test before he started on the trial but hasn’t got those results back yet.

Man G said that PLATO was a very popular trial which was likely to be filled by September.  If any members were interested in this trial, they should make enquiries quickly.

In reply to a question from Man C, Man G said that he wasn’t sure at what stage of the trial he would have C/T Scans to see the impact of the drug.

Man G commented on the different mechanisms of Xtandi and Zytiga.   Xtandi works on the androgen receptor to prevent testosterone reaching the cancer cell whereas Zytiga stops the production of testosterone.

Man C said that from his reading the best effect could be obtained by a combination of drugs and optimal sequencing.-  Although he acknowledged that last month’s speaker, oncologist Dr Howard Gurney, had expressed a different view on combination therapy, because of possible cross-resistance.   Man C mentioned an example where a recent clinical trial raised the possibility of chemotherapy delivered early, combined with androgen deprivation therapy.

Update

Man B gave an update

He had been on Zytiga since August.  His PSA had not gone down but had risen from 14 to 28.  He was having bone and C/T scans every six months.  The last of these was on Monday and suggested possible spine damage. He had an MRI on Wednesday which showed 14 spots over the spine, in particular a problem about T10 with the risk of a possible collapse.  It was decided to treat this area with external beam radiation and he has had the first of 5 external beam treatments.

Man A asked Man B whether he was on Denosumab (brand name Xgeva).  Man B said that he was having Denosumab every 4 weeks.  He was also on Zytiga but had been advised to stop this during his radiation treatment.  Man A commented that he had not been advised to stop Zytiga during his radiation treatment.

Man C asked Man B if he had considered Alpharadin (radium 223) for his bone mets.  Man B said he hadn’t.  His doctors said that, if the mets on his spine became painful, then further radiation could be used at that time. A number of men wondered whether it was a good idea that further treatment should be delayed until the mets became painful.

A question was asked as to whether Alpharadin was available on the PBS or only on clinical trials.  Man A said that the PBS were willing to approve Alpharadin, but were negotiating on price with Bayer..

Chairman Bruce said that in his medical training he was taught that, if there were spots on the vertebrae, you tested these by firmly tapping on the spine.  If there was any tenderness, then there was a problem which should be treated.

Website

Man C asked whether members used the website and its information, what could be done to make information easier to find and whether members used the search function. 

Chairman Bruce and Man B said that they didn’t use the website much.

Man I suggested there should be additional headings.

Chairman Bruce suggested this question was best left to our IT gurus.

Man E asked members who had not done so recently to update their stories on the website.

Man G advised that his endocrinologist would be the guest speaker at next month’s teleconference.

Updates

Chairman Bruce gave an update.   Prostate cancer can be very slow growing.  10 years after his initial diagnosis, he has 2 spots on the ribs.  Although he has advanced prostate cancer, he has no symptoms.  So at age 83 he feels that there is no need for aggressive treatment of his disease.

Man J said he had mets in the sacrum and was being treated with Zometa.  He had a bad reaction to the infusion and as a result his doctor extended the infusion time so that the next infusion was put in over one and a half hours.  This was an improvement but he still wasn’t too flash today after his infusion yesterday.

Chairman Bruce said that this accorded with what he had been told by his medical colleagues.  Zometa must be given slowly – too fast and there is a bad reaction.

Man A said that he thought that Xgeva was better than Zometa.  Man C said that the two drugs had different mechanisms but similar side-effects.  Man E said that there had been several recent articles in the forum on Xgeva and Zometa.

Man C mentioned the importance of calcium and vitamin D supplementation in bone health.

Chairman Bruce warned that too much calcium can form stones in the urine.  Man C commented that too much calcium can also affect the heart.

Man G said that he was taking calcium and vitamin D supplementation in order with his endocrinologist’s recommendations and was having his Vitamin D levels checked annually. 

Man I announced that he was a grandfather for the first time.  Man C said that 2 of his grandchildren had just moved to Austria and so he was unlikely to see them for some time.

Man J apologised that he would miss the next teleconference as he would be on holidays in the Kimberleys.

The meeting closed at 11am.

The Minutes of the phone-in meeting are general in nature and not meant as advice. You must consult with Health Professionals for advice.

 

[Billy Brag]

Hi Everyone

 

Sorry that I missed the phone in but I would like to add some comments about Anandron as I have had an excellent response with minimal side effects

 

I was diagnosed in August 2005 with PSA of 24 and Gleeson 4+4 and cancer had spread to the right acetabulum -had severe hip pain

I have been having 6 monthly Eligard injections since with some periodic Zometa infusions -my pSA only dropped to 0.7 but stayed around 1 to 2 over a number of years .In DEcember 2013 my pSA reached 40 and my Oncologist presribed Anandron-PSA has dropped to 1.9 much to the amazement of my Oncologist -no problems with the eyes but I decided to take the tablet in the evening and not in the morning -I do not feel as great as I used to but still lead an active lifestyle with plenty of exercise

 

My Oncologist said I could hope for a similar responses with other types of hormone therapy before I move onto Zytiga or Taxotere

 

Hopefully will join the August phone in as I will be overseas in July

 

REgards

 

Ian Vagg