Volunteers needed: New study: Needs of men with advanced prostate cancer.

[Admin]

 

Volunteers needed: New study: Needs of men with advanced prostate cancer.

Miranda Xhilaga and Wendy Winnall (both of Prostate Cancer Foundation of Australia (PCFA)) are starting a study of what men with advanced prostate cancer think about the treatment decisions available to them.

 

If:

• your cancer is out of the prostate (metastatic); and

• ordinary hormone therapy (ADT) is not enough to keep your PSA in check (castrate resistant or hormone resistant);

Miranda and Wendy would love to interview you in Phase 1 of their study.

 

How to let Miranda and Wendy know

Just reply to this email with Name, Address, and phone number. Wendy and Miranda will get in touch. (Address is needed because a variety of men are needed from city, regional and rural locations.)

 

The Study

The Lay title is:

Investigating treatment preferences of patients with advanced and metastatic prostate cancer.

The scientific title:

A discrete choice analysis of patient preferences for the treatment of metastatic castration-resistant prostate cancer in Australia.

 

A lay description of the project:

We are looking at ways to gather a large number of views from people on what they think about benefits and risks of various treatment options. This type of research is called ‘Patient Preference Research’. This may help those who assess new treatment options to understand how people value certain benefits and risks of drugs.

 

Below is more specific information for you, to help in identifying men who may be a very good fit for this study, that we may be able to specifically invite to be part of the interviews.

Scientific aims:

 To develop a greater understanding of mCRPC patients’ treatment preferences, focussing on; 
1) the specific treatment attributes that men with mCRPC value; 
2) the relative importance of these treatment attributes; and 
3) the risk-benefit trade-offs that characterise patients’ choices around treatment options.
     

The project consists of two phases. Phase 1 will recruit 14 men with advanced prostate cancer for in-depth interviews about their experiences living with advanced prostate cancer, its symptoms, treatments and side effects from treatments. Information from phase 1 will be used to develop the questions used in phase 2. The second phase is a cross-sectional survey study for 100 men with advanced/metastatic castration-resistant prostate cancer. Currently, we are recruiting for phase 1 only.

The information from this survey will give us a greater understanding of the needs and preferences of patients with this advanced stage of prostate cancer. The overall aim is to understand the decision-making process by these men, what is important to them and how they manage their treatment options. Although patient preference research itself is not new, it has not yet been used to understand the experience of Australian men with advanced prostate cancer.

[Guest]

I am interested in joining this survey.

My Name is Trevor Martin. My Phone No. is 0466054298 and my email is feedertm21"yahoo.com.au

I have CRMPCa  as a result of stopping hormone therapy ( Zoladex ) on instruction from my urologist.

I have since had unsuccessful chemo with Docetaxel and have just started on Abiraterone 2 weeks ago so I have no result for this.

I live in the country 200 km from the capital city - Adelaide - where I see an oncologist at the RAH. Not an ideal situation for me!

I hope I may be able to help in this matter.

Trevor Martin

[Roscoaus2000]

My advanced prostate cancer was diagnosed in oct. 2016. Full body CT scan and bone on bone full body scan showed extensive tissue cancer outside of prostate and extensive cancers throughout skeleton. Psa 9000. Unbearable pain in lower back and shoulders. After 3 month treatment with Zoladex injections and daily casodex50 the psa dropped to o.76.

after 6 months psa was O.1 and scans reported that all tissue cancers were resolved but the cancers in the skeleton were still present but. Not as well defined,

next psa test late this month.

pain resolved within a month of first treatment with the help of Panadol Osteomol 6 per day. After 3 months panadol reduced to 2 per day. Strength restoring after 6 months. 

Current symptoms are mild pain in shoulders during sleep. Some dizziness during day time but no falls.

specialist forecasts that the cancer will become hormone resistant in next 3-4 months.

i would be happy to join the trial if useful.

regards,

Ross Stacey

[Patrick Turner]

Someone said they are doing a study, but who knows if what they study will help anyone.

I have probably had Pca since 2005, but Psa stayed low, and when it rose to 6 at diagnosis in 2009, I had a Gleason 9, and all 9 samples were positive at biopsy. Psa has been up and down to 8 twice and might now be about 6, was doubling in 8 weeks after becoming resistant to ADT since 2010. I'm now on Zytiga abiraterone, and I have no idea how long the Pca will take to kill me, but I do know its very likely it will. My full story is at www.turneraudio.com.au, scroll down to Patrick's Concerns and there's my Psa graph since 2008.

I may be able to get into trial of Cabitaxel or Lu177 later this year. Last PsMa gallium scan showed about 20 small mets in lymph nodes and bones.

So far, no pains, and I am cycling 250km a week, and continuing to eat vegie diet, keep BMI < 25, and have resting HR of 50, so docs are very pleased to see me  turn up in lycra. They are not pleased about the last PsMa scan, my oncologist said "This is a horrible scan..." but I thought it quite natural because when Pca first grows with high level of testosterone, it can begin to spread, especially if the cells are "aggressive young mens' type of cancer" which is what my urologist said in 2009. The ADT worked OK from 2010 to Xmas 2016, then I had Cosadex from Aug 2016 to July 2017, and it seemed the Cosadex only extended ADT suppression by 6 months. I had 2 lots of RT, and PG now has had total of 101Grey and maybe just enough to kill Pca cells in PG, because report with last PsMa test says tumour is less in PG compared to PsMa scan a year before. But now all treatment must be systemic, chemo or Lu177, and I won't know for another 3 weeks if abiraterone is working at all. It does seem that my mets are generating psa, so that if I do get Lu117 with the binding solution agent, it will make Lu117 go to where cancer is.

I looks forward to report about Lu117 trial from July-October 2016 at Peter Mac. From what little I know, Lu117 has not helped everyone who tried it, but Dr Hoffman at PtMc made a video which explained theranostic treatment with gallium 68 for diagnosis and Lu117 for therapy. Earlier this year I asked him in email about what happened to the guy in video who had months to live, but who had all his many tumors shrink right down after 2 Lu177 infusions, and he had come off morphine, was out of bed, and Psa had gone from hundreds to less than 10. Our Dear Dr Hoffman was very coy about saying what happened to the man in the video, but did say we would all know more later when a public announcement is to be made. 

Last week, the Australian and Canberra Times had 2 different stories about work at Garvin Institute where cancer samples were subjected to DNA analysis and this allowed just the right chemo drug to be selected. A large problem with chemo is that it fails so often because everyone's cancer reacts differently to any particular chemo.

A Dr Yiu in ACT also had story about his immune therapy work and a smiling happy patient fellow of 47 seems to have had survived gall bladder cancer. I phoned Dr Yiu's office, to ask about what was on offer, but was told by office staff I must be privately insured, and it made no difference that I could afford the costs, they didn't want to deal with me. 

So there are things we hear about and things we read about, but the reality is the very little of the cutting edge treatments are reaching many people, and the financial dealings and ethics that go on for such expensive treatments may be putting much possible treatments beyond the reach of many ppl.

One doctor said I had "2 to 5 years" left, and usual prognosis for Pca when it gets into bones is that 95% of patients die within 5 years. But the PsMa scan is detecting bone mets maybe 2-3 years before other scans ever could, and so this is leading doctors to give chemo or other treatments earlier. Nevertheless, I much doubt that anything being researched now will mature into good therapy in time to be useful for myself. 

But thousands of other 70 yr olds have far worse problems than I have. We all want a fix, and soon, but it just may not arrive, so we must be prepared to say goodbye.