Aussies that are her2+

jhandley · 10-25-2005, 06:21 PM

Hi all
I am in Victoria Australia and would like to make contact with other Aussies to share info about what is available where; for example I know Lyn in Brisbane has access to herceptin, taxol and carboplatinum but my onc said herceptin was only approved for use with taxanes. I am keen to get carboplatinum also, based on the latest ASCO results which shows more than doubling of time to progression; plus good reports from others on this site. I am also keen to get the her 2 serum test done but dont think it is available here yet.
I have just had my second tx with taxol and herceptin for one spot on the liver.

Thanks for such a good site.
Jackie

Alice · 10-25-2005, 06:44 PM

Hi,

I'm in America not Australia but I had carboplatin-taxol-herceptin before surgery and at the time of surgery my pathology reports came back all samples are cancer free!!!Including nodes which were positve for cancer with all my scans and biopsys. I had stage 2 grade 3 IDC. My treatment is part of an ongoing study and I hope you are able to get this treatment if it is what you need.
Good luck and take care,
Alice

Judi Summers · 10-25-2005, 11:44 PM

Hi Jackie
I am in Brisbane and have just herceptin, am allergic to the chemo, have been on it for 3 years now and am doing extremely well.
Judi

Lyn · 10-26-2005, 05:19 AM

Hi Jackie, Have your onc talk to my onc Boris at Redcliffe Hospital, here is his e-mail address and he will be able to tell your onc how he got around it, tell him Lyn sent you in the e-mail to Boris. Good Luck Love & Hugs Lyn

E-mail Address(es):
Boris_Chern@health.qld.gov.au

chrislmelb · 10-26-2005, 08:45 PM

Hi Jackie

I am in Melbourne and am about to start Herceptin for 1 or 2 years after being in the control arm of the HERA trial for early stage. I go to the Royal Melb and see Michael Green.
All the best with your treatments
Christine

al from Canada · 10-26-2005, 09:09 PM

Alice,

WOW, that carbo-taxol-herceptin treatment sounds like a kick-a_ _ combo!
Good luck,
Al

Lyn · 10-29-2005, 02:38 AM

To Christine in Melbourne, I have had 2 confusing private message on my in box with your name and details on them. Were you in Mooloolaba at the dragon boat races?

10-30-2005, 04:30 PM

Hi
I am Linda in New South Wales

chrislmelb · 11-05-2005, 04:16 PM

Lyn, my apologies. I did send you a lengthy reply but it seems to have disappeared as one i sent to jhandley. I must look more carefully when i am sending private messages. Did you ever get a reply? i wonder where they went? i'll compose another one soon but must go for a walk to beat the heat.
Christine

Roz · 11-06-2005, 02:13 AM

I am in Sydney and attend St Vincents Hospital. I started on Herceptin after recurrence (skin,lymph, pleural effusion) in January 05. Also take Arimidex. I agree it is important to know what else is happening in Australia, but I can't help you with this particular question.

shulland · 11-15-2005, 07:38 PM

Hi, Sue here from Yamba,northern NSW.I have just joined today. Chemo AC+T 6 months ago.Mastectomy of r breast. Just received news last week that cancer was Her2+++.Am going to have a go with Herceptin even though oncologist says there is no scientific proof. It will cost me $70,000. Is there another way for me to receive this treatment? It is wonderful to find you all. lots of love Sue

jhandley · 11-15-2005, 10:54 PM

Hi Sue

Good to hear from you ...at this stage you will have to pay for herceptin in Australia unless you have advanced disease. Hopefully it will be on the PBS soon. Keep in touch.
jackie

Lyn · 11-16-2005, 01:16 AM

Hi Sue, I am in Caboolture Queensland and I have been on Herceptin for 4 years. Radical Mastectomy in 1998 with an agressive cancer,I was supposed to be dead in about 2000. My onc can't explain why I am still alive, he says it is a miracle, I say it is Herceptin. I strongly believe the Herceptin slowed down the agressiveness of this cancer, but I have been fighting it non stop ever since. I haven't had to pay and with all of my treatments since 1998 I am just about the million dollar woman. I am about number 38 on the list out of the 1600 plus on it in Australia, I don't know how the ones before me have done but I did know 3 ladies after me who did not make it. 2 had very advanced organ involvementa and the other kept on developing infections in her pic line, I believe that was as a result of having a tetanus injection, and as this drug was new at the time my onc wasn't familiar with which chemo drugs had to be given with them so he had to take my lead from the knowledge I get from this board. Still he has only a couple of us on it, it seems we are like dinosaurs here, few and far between. My nephew's mother in law developed BC a year before me, just a small lump, no big deal but she opted for a mastectomy, she was not able to take Herceptin, her disease progressed and she is no longer with us, that was 2 1/2 years ago now. You could always ask your onc to talk to mine and see what his opinion is then.

Love & Hugs Lyn

chrislmelb · 11-16-2005, 02:12 AM

Hi Sue
Keep your eye out for clinical trials. they'll start something soon enough. Here is the web address:

http://www.actr.org.au/actr/handler

What are your diagnosis details? Stage? Lymph node involvement?

All the best on your seach.
Christine

pauline · 11-16-2005, 04:11 AM

Hi all

I'm Pauline from Perth WA.

Diagnosed Dec 04, Stage 2 tumour left breast. Mastectomy, reconstruction, then soon learnt pretty quickly the implications of being Her2! 6 months of chemo (AC and Taxotere), and lucky enough to get on a Herceptin trial, which I completed in June 2205 after a year of treatment. So far so good. I was attending the Mount Hospital here in Perth. Still go for the regular checks every 3 months.

I saw something in the paper this week that Tony Abbott is pushing for Herceptin to get on the PBS, but the powers that be are saying that the data from the trials so far is limited and inconclusive!! It wouldn't be about money would it??? Surely not!!!

Good luck to you all!

Happy days!
Cheers
Pauline

Good luck to you all

PamCl · 11-16-2005, 04:39 AM

Hi All

I'm Pam from Ipswich, Queensland.

I was diagnosed in October 2004, Stage 2 Her 2+ tumour in the left breast. Had lumpectomy followed by AC and Taxol with 30 x rads. I learn't about Herceptin through the Net, phoned Roche in Sydney and found that it was available 'off label'.

I am currently on 3 weekly infusions at the Wesley Private Hospital in Brisbane at a cost of A$3254.15 per dose. I sent emails and letters to Roche, MBF and my local Federal Parliament member trying to find out as much as I could about Herceptin.

Following is a copy of the answer I received from Roche -

'' Dear Pam,
Thank you for you e-mail regarding the timeline for Herceptin’s approval by the Australian PBS for women with HER2 positive breast cancer in primary disease.

It is expected that Roche Australia will receive the registration dossier (data in an evaluable format) for the adjuvant Herceptin studies early in 2006. A submission to the TGA can then be made. The statutory timeframe for evaluation of an application is 12 months, although every effort will be made to ensure the fastest possible evaluation.

Following TGA approval Roche is committed to working with the relevant authorities to ensure that Herceptin use in the adjuvant setting is funded by the government. Provided the data meets the reimbursement requirements the standard process for reimbursement is a minimum of 12 months from the time of submission.

Warm regards

Katherine

Katherine Reid

Product Manager HERCEPTIN

Roche Products Pty Limited ''

It looks like it will be a long time in Australia before Herceptin is available on the PBS.

Bye for now
Pam

shulland · 11-22-2005, 06:14 PM

I was diagnosed September 2004 and underwent right breast mastectomy.I had grade 3/stage 3 infiltrating duct carcinoma(4cm) with1 lymph node involved.It was ER & PR negative.I had 6 months chemotherapy AC+Taxol.I recently found out that it was HER@+++after requesting the test. It is wonderful to read about all the different experiences. Lots of love Sue

01-02-2006, 02:37 AM

Hi, I'm Lisa from Mornington in Victoria. I was diagnosed in Aug 2003 at 38 y.o. with Grade 3, 3cm ER pos with NO nodal involvement. I had a lumpectomy, followed by AC then radiation. I was told that I had an 80% chance of being cured. 2 weeks later I discovered it had spread to my liver with roughly 10 tumours there. This time I was HER2 pos. I had Taxol and Herceptin for 6 months, and am now on fortnightly doses of Herceptin. I just accept that this is now sadly part of my life, and just get on with it. I have my treatment at Peninsula private Hospital, and there are another couple of us having Herceptin. We just thank god it is available to us. Happy to chat anytime. Good luck. Also, I did start out on Tamoxifen, which did absolutely nothing, and am now on Arimidex. I have had sore joints, which is now under control with Glucosamine and Fish Oil. I do get very tired, but I put that done to having a 5 y.o.

jhandley · 01-02-2006, 04:04 AM

Hi Lisa

Good to hear from you. It is hard being a mum and having this disease..I have a daughter aged nearly nine. Did the tx work on your liver tumours? I have some friends in mornington so may get down that way sometime if you would like to meet.
cheers
Jackie

01-02-2006, 07:55 PM

Hi Jackie

After 6 months of treatment, I went from 10 tumours to 3. 12 months on, I still have the 3 tumours, and my latest scan in December showed that everything was still stable. The 3 tumours haven't changed, so I am happy with that result. My onc doesn't want to put me on chemo again until something starts happening again, and I am fine with that. Would be happy to catch up at anytime. My email is lahamilton@bigpond.com
Do you belong to any support groups? We have a couple down this way, and there is also the Young Ones which meet in Collingwood. Not sure where in Victoria you are.
Happy to hear from you.

Lisa