As you may be aware, there has been a lot on the internet recently about adding Abiraterone to ADT early before becoming castrate resistant and a significant survival benefit.
I just wanted to let the Aussie members on this forum that I met with my medical oncologist today and she said that while the results are interesting, it may be some time before this regime is covered by the PBS scheme. I asked if I could fund it myself and she said the cost is about AUD$3,000 per month.
Cheers
Paul.
Hi Paul,
I have made an appointment re the above. Did your medical oncologist advise you to start now?
Regards,
Gary (fellow Aussie)
No Gary, I guess if I paid the $3k per month she'd be ok with it. She actually said the Latitude study has left some questions unanswered. Hopefully this new regime will become standard of care here. I'd rather not have to seek treatment overseas, but I will if I have to.
Hi Paul,
This is disappointing news, as we live in Australia and my husband Bob, has metastasised PC. Bob is presently on triple ADT, and presently we have to pay for the Advodart, as it's not covered on PBS for PC. I have been researching the combination of Abiraterone with ADT and was going to discuss it with Bob's Oncologist at the next visit, but $3000.00 per month is just too expensive.
Thanks for the update,
Cheers from Lee
Hi Lee, I'd be interested to hear what your husband's oncologist says. Let's hope it gets approval. If we all push for it, that may help.
Also Lee, can I ask which ADT agents your husband is on. I'm just on zoladex and my oncologist won't listen to me when I ask about double or triple ADT, thanks.
Hi Paul,
1/6/10 Zoladex for 1 year.
6/12/12 Zoladex for 1 year.
12/12/14 Casodex for 1 month
24/12/14 Lucrin for 1 year after Bone Scan revealed 5 Lesions on the Spine and possible Lymph Node Metastes.
17/2/17 started triple ADT after scan revealed 8 Lymph Node Metastes
Lucrin Injection 3 monthly
50gm Casodex daily
500gm Avodart daily
Very blessed to have an Ocologist who reads all our research, discusses it with us, believes the research is medically sound, and is willing to give it a go.
Bob had RP in November, 2005.
33 doses of Radiation started in November, 2009.
Bob is very active and well. Hope this is helpful, and wish you well in your journey Paul.
If you want anymore information, just email, happy to help.
Cheers Lee
Thanks Paul,
I will cancel my appointment with Siobhan and just stick with the quarterly Lucrin for now.
Regards,
Gary
For Americans, the $A3,000 cost of Zytiga in Australia equates to $US2,250.
But the cost of Zytiga in the USA is $US9,000 a month. Maybe our government and insurance companies do not negotiate well on our behalf. As taxpayers and patients, Americans pay an inflated price.
The newly released LATITUDE study with Zytiga seems to trump the CHARTERED study with chemo for mCRPC men.
For me, the side effects of Zytiga and prednisone were not much different than the side effects of Lupron alone.
Bob
Thanks Bob. When I asked my MO about the cost if I funded it myself, I think she was guessing. If I find out for sure, I'll let you know.
Re: Cost of drugs.
I am presently getting a dose of KEYTRUDA every three weeks. Cost is $30,000.00 per dose (yep, it's not a typo that's $30K). Thank goodness it's all covered by insurance. Next week will be my sixth treatment.
The Keytruda is not for my Pca but for another issue that I'm fighting.
j-o-h-n Tuesday 06/06/2017 12:06 PM EST
There's a Big caveat about all this. Background: I just returned from the American Society of Clinical Oncology annual meeting where this data was presented. At ASCO, I represent Malecare and it's thousands of community participants -- e.g. advanced stage prostate cancer patients. In almost all cases, Malecare requests to meet with pharma industry people about treatments, therapies and support for Malecare during ASCO are welcomed or alternative methods like a SKYPE meeting are arranged.
Malecare made numerous formal requests for a meeting with five (and informal requests to other) Janssen and J&J people. All of our requests to meet with Janssen/J&J were either rejected, passed on to someone else, who then rejected or ignored us or changed into, lets not meet about Zytiga, but lets meet in three to six months about a new drug we are developing. I felt like an MSNBC or Al Jazeera reporter trying to get an interview with President Trump! We don't know why they are being so closed to our advanced prostate cancer patient community...after all, we are their consumers! So, until we have appropriate contact from Janssen/J&J, we have to say to you, "caveat emptor" and pose LOTS of hard questions to your doctor if you are in any way considering Zytiga.
Thanks Darryl. I don't quite understand your last comment. Are you saying you have reservations about using Zytiga?
I think everyone should be asking their doctor Lots of questions If they are considering Zytiga. I wonder why the pharma won't meet with us. Malecare is known for its independence so maybe they fear that they can't control our messaging. I just don't know. I wish I could give you a better reply .
Hello, Darryl, I found this thread while researching adding Zytiga and I am wondering if you have any specific follow-up to this post regarding your interactions with the makers of the drug. Thank you very much!
Thanks for the suggestions.
Paul. I still have a bottle of Zytiga here that I believe I took one dose from...before oncologist took me off. It had become chem castration resistant. Do you want it? It's a months supply.
Thanks for the offer Bill, that's very kind of you. My understanding is that until recently Zytiga was only prescribed in Australia once a man becomes castrate resistant, so I'm surprised your Oncologist took you off it, unless you weren't responding perhaps? Anyway, I am looking into the PBS rules, so I might pass for the time being, but I do greatly appreciate the offer. Cheers Paul.
Sure, Paul. Yes. I developed a rather painful met on sacrum while on it. It did work for 8 months.
My husbands oncologist also seemed to think something was "up" with the Zytiga study. He said it was a drug sponsored study which always has to be taken with a bias.
My feelings exactly Nal.
Trying to see if I can get it on the NHS may have to pay for it, i read on the net one guy had been on ADT & abiraterone for about 4yrs which is great compared to using it after all other hormone drugs have failed as this i understand only makes a difference of 4 to 6 months.
Gary
I live in the US. I just got done with a meeting with my medical oncologist. Based on the results of the U.K. stampede trial, I am now taking Zytiga along with Lupron. Insurance will pay all but $22 a month. Otherwise it would be about $8500/month.
I hope that the government "down under", gets onboard and updates their coverage policy soon!
I hope so too Dr_Who. I've established that it is only free (on our PBS) once you've been through chemo and are castrate resistant. Myself and others here will be pushing the government for a change. Apparently it's a question of cost, the drug company that sells it, are playing hard ball.
Hi Paul, I am meeting with my specialist (at Epworth, Melbourne) in 2 weeks for my 3rd shot of Zolodex and will be asking him about combined treatment (whether, Zytiga, Xtandi, chemo or whatever else). PSA went down from 7.5 to 2 after first 3 months on ADT - I was expecting much less - and I am anxious to see how it is after another 3 months. He has not been very forthcoming to date with any information except that which is absolutely necessary and it will interesting to see what he has to say.
Regards, Hazard
Another corny joke posted by an old buzzard!
ADT Effectiveness
My Dad
Amusing Story 
Treatment Question
