Australian Treatments and Access
 

I've discovered in my short time here that there are quite a few Aussies registered, and goodness knows how many keeping an eye on us all!

I've had positive feedback from some of the Aussies about starting this thread and sharing information about treatments and access in Australia. We have a public health system which provides herceptin and tykerb at no charge through the Pharmaceutical Benefits Scheme, but there are quite a few official restrictions, e.g., if herceptin fails, and you go to tykerb, you supposedly can't go back to herceptin at another time. Also, herceptin and tykerb is not allowed to be combined (under PBS).

And we have a much smaller population, so trials for advanced BC, (much less Her2+), are minimal.

So any bits of information we can share about treatments, trials coming up, getting 'around the system', lobbying etc, I hope will be of benefit.

So maybe I'll kick it off with a question - does anyone know much about a TDM-1 trial coming to Peter McCallum Hospital in Melbourne? Or anywhere else for that matter?

Cheers Marie

Re: Australian Treatments and Access
 

Hi Bunty
Thanks for starting the thread. I'm treated at Peter Mc and my understanding is the TDM-1 trial here is only for first line metastatic treatment so I am definitely not eligible. I don't think you would be given you are having Taxol but am unsure. I have been quizzing my oncologist about it for a long time and she has been checking with her colleagues who have closer links to Genentech. So far the answer is TDM-1 is not likely to be available till 2013. There is a trial for heavily pre treated met patients (like me) starting up in US (? THERESA with the second E backwards) but my onc hasn't heard about it being available in Australia. Will ask her again about the current TDM-1 trial on Wednesday and hopefully get some written info for you in a link.
Secondly the rules around Herceptin have changed. You can get it now after Tykerb because the PBS recognises there is benefit of Herceptin beyond progression.I was switched to Tykerb/Xeloda (?late 2009ish) and it worked for a year but then my tumours grew and I could no longer have it. I couldn't get Herceptin funded at that time but got some via a trial. The rules changed last year so now I have it funded by PBS. So my message is switching to Tykerb/Xeloda (if clinically warranted)is not as risky now as you can switch back to Herceptin if the combo doesn't work for you. The onc has to do a bit of paper work but it is achievable.
Trish

Re: Australian Treatments and Access
 

Thanks Trish for the update - I'm very pleased to read about switching back to Herceptin, although I thought it's not funded to have both treatments at the same time. So when you switched back to Herceptin, did you keep taking the Tykerb?

Based on what you have said about TDM-1 trial, I too wouldn't be eligible. You would think based on all the trials going on in the US the PBS would use those findings to base their funding. (Maybe that happens in some cases....)

Well I'm happy that I've learned something from you Trish!

Cheers Marie

Re: Australian Treatments and Access
 

I did take Herceptin and Tykerb together for a time but I either paid for the Tykerb (very expensive) or the drug company (GlaxoSmithKline) gave me some. Should you be in the position of wanting the two together do get your onc to ask the drug rep for some. A friend of mine (who had worked for the MS society) suggested asking and my onc was a little surprised but she did ask and I got quite a lot free. So worth a try if necessary. Thankfully things seem to be stable for you so fingers crossed not necessary.
Trish

Re: Australian Treatments and Access
 

I was chatting to my oncologist about treatments and PBS. She said sadly that she believes the total blockade approach is the way of the future and that she doesn't believe the government will ever fund that - we are going to have to get loud to be heard. I think this frightens me the most - the lack of access to trying different meds that may help us in various combinations.
I guess for now trials are the go wherever possible but sometimes the parameters to get accepted are too difficult. I looked at the TDM1 trial but we felt the risk of being in the taxol herceptin arm was too big a risk for me so I am now on the Bolero trial and so far having a partial response. I am still ever so hopeful for some time NED.

Re: Australian Treatments and Access
 

Amanda
Hopefully the blockade approach will get cheaper as the drugs come out of patent-a long time away I know. So stay well till then!
TDM-1 will hopefully become available on PBS in 2013. You and Marie have quite a few chemo options to work through should they be required so I'm hoping neither of you will require it (if you ever require it) till then.
Trish

Re: Australian Treatments and Access
 

Thanks Amanda for the update. I have searched on the forum for the meaning of 'total blockade' but can't find a clear explanation. Can you or Trish enlighten me?
Cheers Marie

Re: Australian Treatments and Access
 

I understand it to mean targeting the multiple drivers of tumour growth in multiple ways including HER2 (Herceptin and Tykerb attack different aspect of the HER2 cells-H the surface and T inside the cell), and hormones. There are other drivers I'm more shaky on as they are more recent research but Lani and Rich often post about them. The San Antonio BC conference (held early December every year) last year featured papers about total blockade and about and about 'cross talk " between HER2 and Hormones so if you shut down one pathway tumour growth will use alternative routes so you have to target in multiple ways.
Trish

Re: Australian Treatments and Access
 

Hello Aussie friends,

This afternoon I was looking for reasons to avoid having to re-organise my wardrobes and cupboards after having the house painted, so I checked out the Australian Cancer Trials website, and found this one for TDM-1, which just started recruiting. I thought of you Trish, and wondered if it's something that you know about. It seems they are looking for heavily pre-treated women.

http://australiancancertrials.gov.au...ID=542110&ds=2

Trish, I hope you were/are well enough for the NY trip...

Cheers Marie

Re: Australian Treatments and Access
 

THANK YOU, Bunty. I didn't know about the trial and there is a site in Frankston which is about an hours drive from home, near where my sister works so is very doable.Thank you so much for procrastinating on the wardrobe front. My liver is becoming a problem -hope it is functioning well enough to meet the definition "adequate organ function"-one of the inclusion criteria. This is the best news I've had in ages and I am ringing my oncologist tomorrow.
Trish

Re: Australian Treatments and Access
 

Trish, your response has made me very happy, and far less guilty about not getting to my wardrobes!! I really look forward to hearing what your oncologist has to say tomorrow.... Fingers, toes, rabbit's feet all crossed for you.

Best wishes, Marie

Re: Australian Treatments and Access
 

Trish so glad Marie was able to inform you of that trial I really sincerely have everything crossed for you - come on liver pep up once more - please!
Jenny xx

Re: Australian Treatments and Access
 

Thanks Jenny. Will let you know how I get on after Wednesday when I see my oncologist. She is e mailing the trial co-ordinator today so she should have some info by then I hope.
Hope things are going well for you and your gorgeous family.
Trish

Re: Australian Treatments and Access
 

I hope you are eligible Trish! Thanks Bunty for posting. It is good to see another TDM1 trial happening here.
Amanda x

Re: Australian Treatments and Access
 

Sadly Amanda I'm not eligible only because my liver function tests are now so bad I don't meet the organ function criterion. This is exquisitely frustrating because a couple of months ago I would have been fine. Hope your treatment is going well. Everolimus (which I would have to pay for) is one of the drugs one of my oncologists is thinking I could try though my other onc doesn't think my liver is good enough to cope with chemo. Hmm...we'll see. Marie tells me Milk Thistle is good for liver function. For the next 2 weeks I will get by when I am in New York with Tykerb and Dexamethosone. just had Herceptin and Zometa. So here's hoping things will be OK.
Hope things are going well with your treatment (do you know if you have the Everolimus or the Placebo?)
Thanks for your concern,
Trish

Re: Australian Treatments and Access
 

I'm so sorry to hear that Trish - I hope that the New York vibe is better than any chemo thrown at those mets! We were there at Xmas time and had the most fabulous time. I imagine that Central Park will be amazing in Fall.
I am going OK with the treatment - I am not seeing much reduction in my skin met but I had reduction in my axilla node and my lungs were stable (there was maybe a little growth but too small to tell). Next scan in a couple of weeks. We are pretty sure I am on the Everolimus as I had throat ulcers and neutropenia that ended me in hospital - so dose was reduced. The ulcers are a very common side effect of the everolimus. I still get them every now and again on the reduced dose. I guess we don't know for sure though. I also had some nose bleeding which again is a possible side effect of the Everolimus. My onc is very excited about everolimus - especially since the Bolero 2 trial has been halted as the interim results were so successful.
Would Novartis consider compassionate funding for you?
Enjoy New York, New York.
Amandaxx

Re: Australian Treatments and Access
 

Amanda, Marie, and Trish,
I hope you don't mind a non-Aussie chiming in here...
but I stumbled on this thread by accident and wanted to send all three of you my best wishes.
You are all so brave, and positive...I'm inspired.
I sincerely hope that all 3 of you get all the treatment you need, and can celebrate many, many, many years of NED status!
Sent with love and admiration!
Denise

Re: Australian Treatments and Access
 

Trish,
I'm really sorry to hear about your liver function its really crappy!
Anyway hope you have and your family have a great holiday in New York - I'm very jealous!
Take care and look forward to 'hearing' from you back here when you return.
Jenny xx

Re: Australian Treatments and Access
 

Thanks Jenny. I'll let you know what my options look like when I get back. I'm having 2mg of dexamethosone a day and feeling good. Be in touch in a couple of weeks.
Trish

Re: Australian Treatments and Access
 

Denise it is lovely to hear from a non Australian on this thread and thanks for the good wishes. I enjoy reading your posts and look forward to reading more of them when I get back from my holiday.
Amanda thanks for the info re everolimus-it sounds a bit tough though and maybe my liver couldn't cope. I can't imagine how you managed being in hospital with your little ones so I hope you have lots of practical and sensitive help.
I think Novartis would consider cost sharing so I will look at it when I get back. Glad you had such a great holiday and hope those skin mets come to heel -and heal for that matter!
Trish