Minutes of Advanced Prostate Cancer phone-in meeting 22 February 2013

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Prepared by our Secretary, Nev Black

 

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

 

Apologies from Bill Boucher, Geoff Buttfield work commitments, Pat Coughlan, Jim Marshall, Eric Trebilco work commitments, Noel Preston and Ken Crawford

 

Chairman Bruce Welcomes everyone and invites the first speaker to tell his story.

 

Man #26 I have been diagnosed with incurable cancer with an estimated 2 to 3 years. I have been lucky to have the expertise, but it has been imperfect.

 

 I was urinating too much, went in for a check, and came away with late stage cancer. Gleason 9. Had two and a half months of radiation. I changed Specialist and changed GP to a person with a special interest in prostate cancer. 

 

He saw three Specialists; the first had him have a bone scan two months ago and that showed up cancer in the bones. The Specialist put him onto calcium supplement. The second Specialist said he needed X-Rays and the third one told him he should go onto an injection to harden up the bone and also try and stop the prostate cancer from spreading to give him the maximum amount of time before the bones break.

 

 I have wasted two years: I should have had a bone scan immediately I was diagnosed with late stage cancer and also immediately gone onto calcium supplements. I have been recommended for injection of Denosumab (Prolia or Xgeva) or Zometa but it does have a downside in that about one percent of men it can cause destruction of the jaw requiring replacement of the jaw. 

 

I was on Zoladex/Goserelin ( LHRH agonist implant injection 3.6mg 1 month or 10.8mg 3 month) then I was taken off it without me being told why. I was not tested for six months and I was back up to the 30’s PSA which is why I have had these other tests. As a result I am certain I should have stayed on Zoladex. I am on Zoladex again now because the GP put me back on it some months ago. I am 71 years of age. I am having a PSA test every three months and my last PSA result was at 0.5.The first test went from 30 down to 12 second test down to 0.5 and I am going back for another test shortly. The USA and Britain have standards for the treatment of prostate cancer but Australia does not seem to have. Essentially it seems GP’s and Specialists can do what they want to do and because there is not a standard they are not given a standard to know about and apply particularly at GP level. 

 

As a result of what has happened to me I am going to try and get a standard whatever it is, to have at least a minimum standard apply. This minimum standard is what every medical person would have to abide by. 

 

Man #13 In Victoria there is a best practice guidelines which were issued for prostate cancer about eighteen months ago, however I am not sure if it is national. These guidelines are detailed and specific. 

 

Man #26 I would suggest if you are diagnosed with late stage you have a full bone scan and go to supplements to toughen up the bone to stop it breaking and may have some affect on the cancer.

 

Man #13 Prolia and Zometa both have those effects. Prolia is a more recent version. When you have that infusion it needs to be done over an extended period, particularly the first time as you can get some adverse reaction.

 

Man #26 Can the GP do it?

 

Man #5 I have been on continuous hormone treatment since 2003. I had three infusions of Zometa back in about 2005. It was done in a hospital and it took about half an hour to infuse. After the first infusion, about twelve hours later, it hit me like a brick. I went to bed and was exhausted and unable to move for twenty four hours. When I got up I felt great. 

 

That was the side affect for me. Have you had bone density checks done?

 

Man #26 They seem to be ok.

 

Man #5 I had some dental issues a year or so later after the Zometa, which is similar to Prolia, and my Endocrinologist did a lot of checks. Going to a specialist dental surgeon rather than a normal dentist I had three teeth out and I didn’t have any problems with Osteonecrosis of the jaw (ONJ). Since then I have not had any Zometa or Prolia. I manage my bone density, which is a little bit below ideal, but generally very stable for the last ten years, by Calcium Tablets and Vitamin D3 Tablets. The Endocrinologist keeps track of that for me. 

 

Man #13 The Calcium needs to be fully formulated calcium supplement not just calcium carbonate like caltrate is, you need little bits of boron, zinc and magnesium. You should get a blood test on your Vitamin D level. It needs to be up to the 70’s and 80’s at least. If you are not getting enough Vitamin D you need to add the supplement Vitamin D3. One two or three tablets may be needed per day to bring it up because it is important. It is not only to increase Calcium absorption, it has other anti cancer antioxidants effects as well. 

 

Man #5 I take 2 to 3 Vitamin D tablets a day and I keep my Vitamin level up in the top half of the normal range.

 

Man #22 It is about 10 years ago you started to look after the health of your bones. What prompted you to do this?

 

Man #5 My bone scans have always been clean but my PSA has stabilised around twelve (12) which is higher than I would like. The Medical Oncologist suggested it because I was likely to be on the Lucrin Hormone (LHRH agonist) treatment for an extended period. That was when I went to the Endocrinologist and the Endocrinologist and Medical Oncologist work together.

 

Man #4 I would just like to point out for first time persons there is a difference between a Bone Scan and Bone Density Scan, they are two different things all together.

 

With regards to the Zometa, it is done by (IV) infusion. Be very well hydrated by drinking lots of water prior to the infusion and during it. The first time you have the infusion rate to be not less than one hour and not less than thirty minutes for subsequent infusions. 

 

Man #2 I am on Zometa. You do need a blood test prior to it. It will not be done by a GP. It will be done in hospital every six weeks and twenty to thirty minutes is the average time. Unfortunately across Australia we see very few Endocrinologist involved in prostate cancer cases. I think it is great to hear a man have an Endocrinologist on tap, unfortunately that is not available to a lot of us.

 

Man #5 I was seeing the Endocrinologist on a six to twelve monthly visit initially but now it can be up to two years between visits. In my view, if you are on long term hormone treatment, not having an Endocrinologist is negligent. 

 

Man #13 asks Man #26 Has Taxotere (Docetaxel) Chemotherapy come up in discussion with your medical oncologist?

 

Man #26 not at this stage.

 

Man #13 You have a good response to Zoladex at the moment and there are other newer drugs in the pipeline like Zytiga/Abiraterone and Enzalutamide/Xtandi. These would be after chemotherapy. To develop a path way forward you may wish to discuss this with your oncologist. In relation to your life expectancy you have been given, that is a very much median type statically data. Even with your advanced cancer with high Gleason Score, if it is responsive as it appears to be to Zoladex, I suspect you may well be in that long tail where you have a good deal more amount of time left than the median. 

 

Man #26 Thank you very much, because I am in the process of trying to finish a book. 

 

Man #13 You have a lot of options in front of you so you don’t need to feel too rushed. 

 

Man #26 is not on a anti-androgen such as Cosudex, Nilutamide or Ketoconazole with the Zoladex. 

 

Man #5 I was Gleason 8 with a PSA between 5 and 6 with a low of 0.07 and gradually rose after that. When it got to around 3 to 4 I went on anti-androgen Cosudex pill was added to the Lucrin (in your case Zoladex) which gave be benefit for a year. Then I tried a couple of things that were not beneficial. My oncologist then put me on Nilutamide as a replacement for the Cosudex but still staying on Lucrin. I was also diagnosed with Type 2 diabetes and went onto Metformin. My PSA on the Lucrin, Nilutamide and Metformin Combo has stabilised around 12. (didn’t mention Celebrex or Statin) There can be a lot of variation and combinations of you can have before you get to the new drugs or chemo.

 

Chairman Bruce invites Man #23 to speak 

 

Man #23 I turned 80 last month. I was diagnosed in 1996. PSA rose from 5 to 5.7 in twelve months and I then had a Radical Prostatectomy in Sydney with a Gleason score of 3+3. I moved to the Gold Coast in the year 2000. PSA started to rise around 2003. I had Zometa monthly and Lucrin each three months. I had Taxotere at one stage but more on that later. 

 

On the 10th January 2012 PSA 6300 (I think that is an error) 23rd January 2012 PSA was 314 when the Zytiga/Abiraterone trial commenced. Feb PSA 30: March PSA 14: April PSA 9: May PSA 8.6: June PSA 9.5: July PSA 9.9: 15th October PSA 12: November PSA 12.9: February 2013 PSA 15.5. Regular treatment still includes Zometa monthly and Lucrin each three months. I do have bone Mestastasis. I have had a few bone scans over the years the last one was last month and it is not too bad. I had a couple of bad falls in January so if there was anything wrong with my bones something would have broken then. Just about all gone from my spine, but I do have a little bit in the ribs. I am in my 17th year of survival.

 

The trial is easy to do. You take the four Zytiga tablets at least an hour before a meal in the morning. 

 

The people running this trial can take me off it at any time. There were twelve on the trial at the start and I think it is now down to five remaining. Progression of the PSA will take me off the trial however it is not progressing at a fast rate at the moment. The PSA has gone from 8.6 in May to 15.5 in February. From what they tell me it is fairly standard at the moment. My day to day health, I get a bit tired but I am eighty.

 

Chairman Bruce invites the next speaker. 

 

Man #2 How successful was the Taxotere compared to the Zytiga in controlling the prostate cancer?

 

Man #23 Taxotere has to be done in hospital. It dropped the PSA alarmingly at the time. I started the first weekly infusion, which takes about an hour and fifteen minutes, on the 29th of December 2008. The only side affect was a little bit of diarrhoea. PSA was 13 and continued to drop and on the 12th February 2009 it was 4.7 and came down to 0.5 before starting to rise again to be PSA 7.5 on the 12th of November 2009.

 

Man #4 In America they sometimes add Thailidomide and Avastin to Taxotere, do they do that here? This helps the Taxotere work more effectively. (#26 Dr Richard Lam – Multiple Treatment Fronts Chapter 7)

 

Man #5 I don’t think that is happening in Australia but not sure. 

 

Man #13 It may be worth noting there is such a thing as an Ultra Sensitive PSA assay which you would specifically have your Oncologist specify. Important only at the lower end of PSA count. 

 

Man #2 Zytiga, a note was posted to say the government was still sitting on the decision on Zytiga and it had not been authorised yet even though a number of other drugs had been authorised.

 

Man #4 As far as I am aware the Health Minister, Tanya Plibersek, on Tuesday the 19th February announced a whole range of drugs that have been approved but Zytiga they just sat on. However they still have a few months before they have to make a decision. So it wasn’t thrown out they just didn’t make a decision on that particular drug at that Cabinet Meeting. 

 

Man #5 I had conversation with a representative of the drug company about it and what they said was, and the PCFA confirmed, (what you all just said on it is true) the situation in Canberra is once PBAC Committee recommends a drug be approved it then goes to the minister. The minister then has to put it through cabinet. The minister has six months to do that. The danger with that sort of system is the minister has the ability at the end of the six months to say I want another review. So there is the potential to keep the thing running forever, in theory without ever approving it.

 

Man #24 We may then run the risk of a change of government. 

 

Man #5 It has been suggested that you all consider doing something like this. The government is in dire straits at the moment, and they are looking for good news stories. So the suggestion is people like us write a posted letter to the Ministers office, not an email, no more than a page long. This would be an attempt to give the government a good news story. 

 

My suggestion is we all do something like that and the more the merrier. 

 

Man #8 I have just had an MRI of the prostate which costs five hundred and fifty dollars. I had it because the oncologist thought it might be a good idea to see how the cancer was going. It showed cancer in the Prostate Gland and Seminal vesicle. I have been referred to a Radiation Oncologist to see if there is anything he can do. It was recommended in the report that I have a bone scan. The GP has given me a referral for that. The last PSA I had was 0.16. I have been on hormone treatment but because of illness from it I was taken off it for about two and a half months. Do you think the bone scan will help?

 

Man #13 As I understand it a full body MRI is a very sensitive way to pick up bone lesions as well as soft tissue lesions. The latter is helped if MRI is fused with a PET Scan, the two being done together. This is a very sensitive way to pick up soft tissue lesions. An Intravenous injection of Radioactive glucose makes the cancer cell show up under the scan.

 

Chairman Bruce Has anyone else have anything they want to raise.

 

Man #22 When I was first diagnosed the GP thought it may have spread beyond the Prostate, so I was sent for a bone scan. Even though it was clear he said we would have to be very vigilant in the future because of the possibility the cancer may have spread.

 

Man #6 Asks Man #26 if he has heard of the PA Hospital Multidisciplinary Team Clinic For Patients with Prostate Cancer. You need a referral from your GP but the PA will bulk bill and they will completely review your situation and make recommendations. (the secretary forwarded a copy of the PA Hospital Multidisciplinary Team Clinic brochure to Man #26 on the afternoon of the teleconference).

 

Man #23 I don’t know how many of you have regular multi blood tests? I have one every month. My ALP was high at one stage but it is back in range now. I don’t know if the Zometa helped to lower it.

 

Man #13 ALP stands for Alkaline Phosphatase, it is a test which is important for monitoring Prostate Cancer. There is a variant of it which is important if you have a bone issue called Bone Specific ALP which you need to talk to your oncologist about.

 

Chairman Bruce Reminds the group the Gleason score does not necessarily stay the same as times goes on and very likely to raise a little. Once you have a Radical Prostatectomy you get a rather better Gleason assessment because you are looking at the whole organ rather than a tiny sample. In many cases there is a rise from when the biopsy is taken to after the Radical Prostatectomy. 

 

Man #6 Tells the group initially his Gleason was 3+3 but when it was checked by another Pathologist it was 4+5

 

Chairman Bruce When I started learning Radiation Oncology among other things we were doing Palliative Care. 

 

Palliative Care is used mainly in this country to talk about Hospice Care or Terminal Care with a nicer name. I was brought up on Palliative Care, as defined by the World Health Organisation, is the treatment of incurable diseases and not necessarily malignant, as rheumatoid arthritis is one you can have Palliative Care. Palliative Care is the treatment of symptoms and the onset of Palliative Care in my book is the moment somebody is diagnosed and the doctor says unfortunately we are now looking at incurable disease, so that all you men are now on Palliative Care including me. If you have that sort of diagnosis thrown at you it is a bit like the first time you are diagnosed with prostate cancer it can hit you like a brick. 

 

So often the first symptom is acute anxiety which the doctors may or may not manage well. Today we have Psycho Oncologists who understand cancer patients. The treatment of a pain in the bone in prostate cancer people will maybe require some Radiation Treatment that is Palliative Treatment. 

 

I will stick to the idea that Palliative Care starts the day of the diagnosis that you have incurable illness. (See Advanced Prostate Cancer book a guide for men and their families page 168)

 

Hospice Care or Terminal Care (end of life care) is different. 

 

Man #13 The concept that an Advanced Care Plan which are not yet widely done unless you are in Aged Care establishment where they are mandatory. Advanced Care Plan is something everybody should do, it is not to different from a Will or a Medical Power of Attorney. If you Google - Advanced Care Plans - you will find there is a standard format that has been agreed nationally. It is just something all of us should do as it makes our situation better when we ultimately die from whatever cause. 

 

Man #23 I have had a solicitor loose an original will so check occasionally to see if your will is where you think it is. If it is at the solicitor, check occasionally. Have the second original in your possession not a copy of the original. 

 

Chairman Bruce I have a copy of that Recommended Best Practise for Prostate Cancer for medicos, which is a national document. It is a few years old but if anyone wants it just send me an email and I will forward a copy. 

 

Meeting closed at 11am.

 

The next Telephone Meeting will be held on the 22nd March 2013

 

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