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Advanced Prostate Cancer Teleconference 25 Feb 2012

Nev Black

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Chairman Tony Maxwell: opened the Teleconference at 9.30.am on Friday 23rd March 2012

Man #1 said he is now on the Zytiga (abiraterone acetate) trial. He tried to access a trial in March last year but could not make it. He then went on to Cabazitaxel (chemotherapy for advanced prostate cancer) which was a nasty experience.
Man #1 has now been on Zytiga (Abiraterone acetate) trial for about 7 weeks and going fine. Says if members have been on a chemotherapy drug you may be eligible for this trial. Abiraterone dosage is four (4) tablets on an empty stomach, one (1) hour before a meal or two (2) hours after a meal, once a day.
He also takes Prednisone after meals.

Man #2: The Zytiga (abiraterone acetate) trial that Man #1 is on is offered at about eighteen(18) places around Australia. It is not confined to the Gold Coast.

Man #3: Prednisone, with Abiraterone, may give some side effects but should be ok as the Prednisone dose is only small.

Man #4: Who is on small doses of Prednisone at times, said it can affect bone density in some people and makes the skin thinner. It can be much easier to cut the skin and bleed.

Man #2: The Prednisone given in Man #1’s case should only be a replacement amount. The effect should not be as great when taken in trial circumstances.

Man #1: Prednisone in his case is only one (1) five (5) mg tablets twice per day after meals. This should not be a problem. He is also on Wolfren as a result of a heart valve replacement in 2002, so his skin is already thin and bruises very easily.

Man #4: Natural dose is about seven (7) mg per day.

Man #3: Asked Man #1 if there were any trial people on a placebo.

Man #1 replied that everyone is active, there are no placebos. Man #2 confirmed the trials were 100 per cent open label.

Man #4: Asked if there were any other treatments going round at the moment.

Man #1 replied the only other is Cabazitaxel which dropped the PSA but wipes out your white cells. Spent eleven days in hospital of which nine were in Intensive Care Unit (ICU).

Man #5: Said he had been on Prednisone for an Ulcerative Colitis, 50mg per day for a week then down to 5mg per day for a week. Took a series of that for a time, which didn’t do anything for the Ulcerative Colitis, but there was no mention of side effects to bone density or thin skin.

Chairman Tony welcomed and introduced Guest Speaker Trish Rodwick from Diabetes Queensland.
Trish is a Registered Nurse and a Credentialed Diabetes Educator working on Diabetes Prevention.

Sixty people in Queensland a day are diagnosed with Type 2 Diabetes.

Three categories of diabetes:-

  • Gestational Diabetes Mellitus: Pregnant mums, usually goes away after having babies.
  • Type 1 Diabetes (previously known as insulin dependent diabetes, used to also be called Juvenile Onset Diabetes). We now know fifty per cent of people develop Type 1 over the age of 18. Hence the name change.

© Type 2 Diabetes (previously known as non insulin dependent diabetes. Can also be known as a lifestyle disease.

For those of us on hormone therapy we need to look out for Diabetes Mellitus. It is a group of conditions that are characterised by high Blood Glucose levels called Hyperglycaemia. The reason people have diabetes is their bodies don’t make enough of the Hormone Insulin. In the case of Type 1 people they don’t make any insulin at all.
You don’t go from Type 1 to Type 2.

Type 1 is a autoimmune disease where the body attacks the cells in the Pancreas and destroys them. So from the beginning these persons require insulin injections daily or multiple injections daily to live. They would otherwise have high blood glucose levels which you can die from.

Type 2 is what the majority of people that get diabetes develop, this is why it can be known as a lifestyle disease.

We look to prevent Type 2 by eating a healthy balanced diet and keeping our weight range within our doctor’s recommendations. Factors we look at with abdominal obesity. Look at your waist measurement. It is a good indicator that your body is developing insulin resistance.

How Type 2 progresses is due to this excess fat around our waist. Our body becomes resistant to the action of insulin. Now insulin’s job is to effectively open up the cells of the body and allow glucose, which is an energy source, to enter those cells.

Without insulin the glucose will stay in the blood stream and damage the blood vessels. That is the diabetes. So it is very important we have enough insulin to utilise our glucose and the insulin we do have works effectively.

With the development of insulin resistance, what we can see, is linked to abdominal obesity. The body is not able to use this insulin properly. It then demands more insulin from the pancreas and as a result, over time, wears out the body’s ability to produce insulin because it is demanding more and more insulin all the time.

So what happens is what we see in abdominal obesity. That is the development of insulin resistance and then the slow wearing out of the body’s ability to produce insulin. We have a pre-diabetic condition.

We have a lot of good research, from the Baker Institute in Melbourne, to show managing, preventing obesity and being active, healthy eating ect reduces the risk on that insulin resistance and reduces the risk of going onto Type 2 diabetes.

However in some circumstances there can be other factors we can’t avoid. Things like age, family history and some ethnic cultures are also a higher risk factor.

Man #3: When on hormone treatment most men tend to put on weight if you don’t diet or exercise and sometimes in spite of. Man #3 said he had been on hormone therapy nine (9) years and just been diagnosed Type 2 along with a rising PSA. Wondering if any research had been done as to whether long term hormone therapy had any direct effect on the cause of Type 2 diabetes or was it solely the weight factor?

Trish: That is an interesting discussion and as we learn more about the complexities of metabolism and how our body utilises not only glucose, fatty acids and protein but how that impacted on medications we take for other reasons.

You mentioned prednisone earlier and prednisone is a glucocorticoid steroid. Long term high use of prednisone can increase that risk of putting that person at risk of Type 2 diabetes. It does not mean the prednisone can’t be used because it is valuable for the condition it is treating. Doctors are more vigilant at watching how that affects the blood glucose. So the blood glucose needs to be managed afterwards.
Obesity itself creates so many issues in the body and insulin resistance is one of them. The insulin resistance is then linked to Type 2 diabetes.

Trish: Asked Man #3 how he was feeling now with the diagnosis of diabetes while dealing with advanced prostate cancer.

Man #3: It is obviously a negative but as his PSA is creeping up, to a higher level than he would like, the prostate cancer was top of mind for him at the moment. The diabetes while important was No.2

Man #6: Was in agreement Man #3’s statement. Doctor told him, like Man #3 he was pre-diabetic with a blood glucose of 6.9 and not let it get to seven (7) as he was on the limit. He went on to modify his diet and cut back on the sweets. Now blood glucose at 5.8 which is good. He was due to see a cardiologist for follow up tests months ago, but has not seen him. That has become a lower priority. So I think you do prioritise these things and prostate cancer is at the top of the list, potential diabetes is second and the heart is third.

Trish: You highlighted something there. You made some adjustments in your lifestyle that were not too difficult. That capacity to manage the condition without getting out of hand. Eating healthy foods, being active within your physical limitations. A healthy diet to help control or keep Type 2 diabetes at bay is also a diet for a healthy cardiovascular system.

Man #6: Nutritionist told him to cut back on the sweets, so he stopped altogether. Exercise every second day, so he exercised every day.

Trish: Type 2 can take a number of years to develop. Some signs are:

  • Frequent Urination.
  • Thirster than normal.
  • Tired and Lethargic.
  • Poor Healing - cuts heal slowly.
  • Blurred Vision
  • Gradually Putting on Weight.
  • Higher blood glucose level.

Most people don’t feel any different and it is picked up in a fasting glucose blood test. These should be done annually.

Man #5: Symptoms of hormone therapy are Lethargy, Tiredness, Lack of Energy and Fatigue.

Man#5 has been on hormone therapy for two (2) years and nobody had suggested he have any tests for diabetes because there are no uniform test.

Trish: An annual, over the age of forty five (45) should have a, fasting electrolyte and liver function test. The test would most likely be among other blood tests done at the same time.
The ranges are:

  • Less than 5.5 diabetes unlikely
  • 5.6 to 6.9 further tests perhaps
  • Greater than 7 diabetes likely and further test required

A fasting plasma glucose is used for the diagnostic test for Type 2 diabetes.

Man #8: has a Accu-Chek Meter which tests for active blood sugar. He does it before breakfast once or twice a week.

Trish: Fasting for people with Type 2 diabetes test result should be 6 to 8 before breakfast and meals. Two (2) hours after meals 6 to 10. Always check with your doctor that he is happy with that.

Man #3: Diabex (Metformin) is used to control blood glucose in people with diabetes mellitus when diet and exercise are not enough to lower high blood glucose levels (hyperglycaemia). What are the limits then?

Trish: Metformin is not seen at putting you at risk of hypoglycaemia. Its job is to make your body use its own insulin better and is the first line medication for those with Type 2 Diabetes. Metformin is not seen to increase weight either.

Man #3: I am on Metformin and I have dropped a bit of weight.

Trish: Does not always work that way but can have an effect to make you feel a bit fuller and you don’t want to eat as much. If the dose is increased too high too quickly there can be gastro intestinal side effects and you may get diarrhoea.

Man #4: Some people commence with Type 2 then drift into insulin injections.

Trish: Confirmed that is the case and some Type 2 will eventually need insulin. Probably after seven (7) to ten (10) years.
Trish: Members are welcome to contact her at Diabetes Queensland. www.diabetesqueensland.org.au
or Phone 1300 136 588. Jim has further contact details.

Chairman Tony: Thanked Trish on behalf of all the members for a very valuable presentation and discussion and the interactive nature of the session.

Man #5: Has been off hormone therapy for 14 months last November. Lowest PSA reading was in September 2010 and was 0.13 by November 2011 PSA 9

The increase in back pain around July August 2011 saw an increase in my slow release Tramadol (Ultram) from 100mg to 200mg which didn’t seem to make much difference. When mentioned to the oncologist the dose was increased to 400mg of slow release Tramadol (around September – October) and 200mg of quick release Tramadol with little difference.

Man#5 was then referred to a radiation oncologist in Toowoomba where they were concerned the pain was caused by the increase in size of the tumours pressing on the spinal nerves. Oncologists could not give radiation to the area because the maximum dosage to the pelvis and right shoulder previously. It was then suggested he go back onto the hormone therapy to try to reduce the size of the tumours. Thus reduce the pain. He had a Zoladex (goserelin) implant and course of Casodex (bicalutamide) in November 2011
November PSA 7.7 Testosterone 12
December PSA 1.5 Testosterone .5
January PSA 0.82 Testosterone .5

The Tramadol was cut by 50% 100mg a day quick acting variety. He has had back pain since he was diagnosed with a degenerative disc L5 S1. Not sure now if it was the tumour size or he was just going through a rough patch. He has further blood tests scheduled for next week. Was due for a Zoladex implant two weeks ago but has not had it.

Man #3: Asked Man#5 for his Gleeson score. Reply 8. Man #3 confirmed his was 8 also.

Man #1: Looked back on his records, he was Gleeson 6. His observations were when we get older we are lucky if we don’t get some pain somewhere. From the sitting position he at times has taken six to twelve steps to get fully erect (80th year young).

Man #3: Had a bone scan recently. While it was clear of cancer was horrified by the fusions here and the restricted movements there (66 years young).

Man #1: Bone Metastasis starts in the big bones first Tibia or Fibula. He was asked once when on Zometa (Zoledronic Acid) by the nurse if he had any pain his reply was “No. Should I?”
Nurse “Yes, excruciating “. He does admit getting a shooting pain at times but expects that.

Man#7: Put in a story of how he was tracking about November. After that starting to feel more and more pain and the blood tests showing PSA increasing. Then went for more scans. Tumour is progressing and the hormone is starting to fail. So it was time to go onto Chemotherapy, about last December 2011. Before starting he had Radiation Therapy for pain in the left hip, spine and right shoulder. He then started Docetaxel (Taxotere) at the beginning of January 2012 and began Denosumab (Prolia) each 3 weeks to help strengthen the bones. The side effects of the Chemotherapy and Radiation Therapy include tiredness, real fatigue, dry mouth, ulceration in the mouth and his backside became painful. Three (3) doses of Chemotherapy to date. The last one a week ago. About three days after the Chemotherapy “it hits me for about a week. I then go through a period where I am very susceptible to infections, because my blood cell count drops, for about four (4) days.”
For pain management: (a) Fentanyl patch (cool.png Panadol Osteo and © a morphine based drug Endone (Oxycodone Hydrochloride) If he forgets to take one he is in serious trouble.

The medical oncologist is sending Man#7 to see a pain management specialist. Man#7’s chemotherapy plan is five (5) doses, three (3) weeks apart. He will then have a rest to see how he is tolerating chemotherapy. Might have to have a break for a few weeks and then go back onto it.
His PSA is very low, so as a marker it is unreliable in his case. When his hormone therapy failed the PSA went from point one (.1) to point six (.6). At the moment it is flat lining. Last three tests, point 6, point 6 and point 5.
The second marker he has is scans which are more reliable in his case. At the commencement of the chemotherapy he had a base line scan done. The next scan is on Wednesday 29th February 2012.

The third marker is “How are you feeling mate?”
Sometimes I feel not to bad but not great, other times I feel like death warmed up.

Man #1: Was at a meeting and a speaker from Sullivan and Nicolaides (S&N) spoke about Prostate Health Index (PHI). The doctor told him he didn’t put too much faith in it.

Man #2: PHI – a test to help decide whether an undiagnosed man should have a biopsy
This post-teleconference contribution is from Jim Marshall to attempt to correct the wrong information he gave the teleconference.
The PHI test has no proposed use for advanced men.
PSA was found in the blood.
A simple rule some doctors used to suggest biopsy:
PSA of more than 4 = biopsy.

Free PSA was also found in the blood.
A simple rule some doctors used to suggest biopsy:
PSA 2.5 to 10 + Free PSA greater than 15% = no biopsy
PSA 2.5 to 10 + Free PSA less than 15% = biopsy

p2PSA (also called [-2]proPSA) was also found in the blood.
It also turned out to be a likely indicator of prostate cancer.
No simple rule here – a complex calculation of PSA, Free PSA, and p2PSA gives a result which seems to suggest whether a biopsy is needed or not.
The result of this complex calculation is called the PSI (Prostate Health Index).
Researchers report that the PSI may be a good predictor, but there is no long term data to back it as yet.

Man #3: Asked Man#7 as his PSA is of little use, “How many tumours do you have and what was your Gleeson score?”

Man#7: Gleeson 9 and have Metastasis in bones and evidence in lymph nodes but generally not in the soft tissue. Confirmed he still had his prostate.

Man #5: Asked Man#7 “The pain you are experiencing is it from the side effects of the Chemotherapy or is it from the Metastasis?”

Man#7: It is mostly from the Metastasis.
Comes in two forms:
1. Actual Metastasis in the bones.
2. In December I had Radiation on the spine because the tumour was entering my spinal canal. So the other pain I get is nerve pain.

Man#5: That was the kind of pain he had and went back onto hormone therapy. He then asked Man#7 if he was still on hormone therapy.
Man#7: Confirmed he was still on Zoladex (Goserelin) implants. His oncologist said there are three (3) levels of Chemotherapy they can use but is on the first level at the moment. The oncologist also said in certain circumstances he may be able to get back onto hormone.

Man #3: Reiterated, Abiraterone and MDV3100 are on various trials at the moment. There are possibilities some of these new drugs may provide an opportunity for Man#7 and he might investigate that aspect.
It is a difficult situation you have got and we feel for you. The chemo is quite demanding and you are confirming that. The group offers Man#7 their best wishes.

Man #1: Was first diagnosed with prostate cancer in 1996 and also Non-Hodgkin’s Lymphoma. That was his first encounter with chemotherapy and it didn’t worry him, except for the diarrhoea at the start. He reiterated he had a lot of Taxotere over the years.

Man #3: Reminded these are very personal things, and vary dramatically, from person to person. The side effects change dramatically as well.

Man #3: His PSA is rising over time. He had tried different combinations with hormone treatment. Most recent secondary hormone added Anandron (Nilutamide) 150mg daily to the ongoing Lucrin (Leuprorelin acetate) in October November 2011. PSA then was ten (10). Recent PSA eleven (11). Gleeson score 8.

Man #3 said he is trying to get some scans done at Westmead Hospital with the view to get onto Abiraterone or MDV3100 pre-Chemotherapy or Radiation Therapy. He will keep us posted.

Man #4: Seems to be a common theme here. You can’t get onto these trials unless you have a traditional scan that shows you have Metastasis. If your PSA is rising, why not? It seems you need evidence if you go onto a trial drug to be able to see that evidence on a scan.

Man #3: Early on in the progression of the disease the longer it would take for the results to come out. Drug companies may be wary of doing trials too early because of the cost.

Man #5: Was told they needed to see some new Metastasis appearing after I turned hormone resistant. That was the rider as per the Multi Disciplinary Team (MDT) at the Princess Alexandra Hospital (PA) in Brisbane.

Man #8: Gleeson score nine (9). Has been on and off hormone therapy. Off at moment with a fast rising PSA. His PSA was at sixty six (66) at one time and the oncologist said it was no point in having radiation because the cancer could be anywhere and everywhere. When his PSA rises to ten (10) he can have a bone scan, PET scan and CAT Scan. That would tell him if there was any cancer outside the prostate.

Man #3: He is personally wary of Radiotherapy.

Man #9: Had identified Metastasis in his pelvic area which was treatable by Radiotherapy mid last year. PSA was 3.5 initially and now PSA is 1.7 which validates having Radiotherapy.

Man #3: Said he would make available to everybody details of this special PET scan that he is having at Westmead Hospital when the results are received.

Jim: A reminder on Wednesday night 11th April the Brisbane Support Group Meeting at 7.00pm will have, Doctor David Grimes, a medical oncologist speaking on Advanced Prostate Cancer. Everyone welcome.

Daryl: A reminder of the Prostate Cancer Awareness Evening on the Gold Coast.

  • Date: Tuesday 27th March 2012
  • Venue: Seniors Centre: T E Peters Drive Broadbeach
  • Light refreshments served at 8.30pm
  • You can assist with catering please register your interest to:
  • Daryl 07 5522 64 82 or Loraine 07 3166 2144

David Abrahams: Toowoomba will put on a small bus if numbers suffice.

David Abrahams is an apology for the March Teleconference as he will be away.

Jim: Thanked Chairman Tony for being chairman and for the excellent job he had done.

The formal meeting closed at 11.10 am EST.

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