it's wonderful to see that there are trials for triple negative metastatic bc. Are there trials for er+pr+ HER2- happening here at all? I have just returned from the Hallwang Clinic in Germany where I was given the GP2 vaccine as the Clinic tested my tumour which they sourced from Australia and I tested positive for HLA antibodies and this made me eligible for the vaccine, which is both used for HER2- and HER2+ bc. I have bone mets and am on Faslodex and Xgeva, both of which are recommended with the GP2 vaccine. It's interesting too that in Germany I am slightly HER2+ but here I'm HER2-, just different testing, but makes me think that really no one knows for sure. I'm hoping that the GP2 works as I'm NED in my organs, but have bone mets. It is like having my own immunotherapy trial, wish HLA testing was available to everyone here.

Hi Giedre, I read your post with a lot of interest and then checked out the Hallwang Clinic on the internet. What a fantastic clinic. Must have been pretty incredible to have gone there. They sound as though they are forerunners in immunotherapy. Totally agree that it would be great if the testing was available here. Thank you for the post and please continue to let us know how you are getting along. Merry Christmas Xx Cath

Hi Giedre, I hope that you are doing well. I will let our policy team know about your query and see if they have any information to add. Due to Christmas staff leave, it may take a while for the team to get back to you. Very best wishes, Caroline

Hi Cath. Yes the Hallwang Clinic was good I think, as I have to wait to see the results of their vaccines. The main doctor there, Dr Nolting is very kind and compassionate and researches cancer and immunotherapies. The vaccines come from MD Anderson in America and Germany doesn't have the strict rules for medicines that we have here. I found out about Hallwang as I stumbled across the Inspire website when I was first diagnosed. I don't go on Inspire much, only lurk a lot. It was good to go to Hallwang, and they do have good results, they have a Facebook site too and the lady, Elizabeth who is on there now, we met there and I'm very happy that she is in remission as she was very very sick. Merry Christmas to you too. Xxxxx.

The vaccine sounds intetesting...I tried to navigate if we were doing clinical trials here but it is difficult to find. Being a her2 grade 3 (plus es+) I am very interested. They way I look at it...it can't hurt.

Thank you Caroline. There are a few people from Australia on the Hallwang Facebook site, with great testimonials, one is a man from Sydney who was given up on with his bc spread in Australia, i agree with you primek, it can't hurt but I am just hopeful the vaccine can keep the bc in my bones. The only drawback is the long flight to Germany, but my husband came with me and they also have accommodation in house at the Hallwang Clinic.

Immunotherapy for er+pr+ HER2- | BCNA Online Network

Giedre
Member
9 years ago
Thank you Kathy, my oncologist has told me about Ibrance with Letrozole as maybe the next line if treatment. I'm on Faslodex and Xgeva for bone mets at the moment. The vaccine that I was given at Hallwang in Germany was GP2 and the oncologist there said it was good with Faslodex. My oncologist here was very interested in this as the oncologist at Hallwang gave me a comprehensive report of my treatments there and my blood tests results to pass on to my oncologist here. I hope that Ibrance does become available here very soon.
Kathy_BCNA
Member
9 years ago
Hi Gierdre
This is Kathy from BCNA's Policy Team.
As some of the ladies here have already mentioned, palbociclib (Ibrance) is a new drug for ER+/PR+/HER2- breast cancer. There have been very good results with it in international trials and it is already available in many countries overseas, including in Europe and the US. We at BCNA hope it will be available in Australia later this year. We are currently writing a submission to the government in support of it, and will publish this on our website when it is finalised. We'll let you know via the online community when it is available for you to read.
It is an oral therapy that is taken with letrozole or faslodex.
There are trials in Australia with palbociclib so you may like to talk to your medical oncologist about whether it would be suitable for you and whether you would be eligible for a trial. There are some pretty strict eligibility criteria.
All the best
Kathy
Giedre
Member
9 years ago
Thank you Cosette. I have registered with Australian Clinical Trials. Giedre.
Cosette
Member
9 years ago
Hi @Giedre, there are a couple of great websites you can search for clinical trials. One is Australian Clinical Trials. The other, which you may prefer, is Australian Cancer Trials.
Giedre
Member
9 years ago
Hi Airlie. Everyone is treated differently at Hallwang according to testing that they carry out. My treatment would be different to everyone else's. If you Google Hallwang, they have a website with all their contact details, they also have a Facebook site. I contacted them by email, then the doctor called me to discuss treatment, they wanted to source my tumour tissue from here to see what treatment they could offer me, I had to sign an authority which they emailed to me to allow them to contact the pathology lab here. They also wanted a description of my diagnosis and treatment here, which I asked my oncologist to do and he did, so I emailed this to Hallwang. Then they came up with a treatment plan with costs for me to accept. It's quite expensive but different for everyone, so I really can't give you a ballpark figure. The reason for the cost is that Hallwang source there medicine from MDAnderson in America, and because it's off label, the medicine costs Hallwang a lot as well. Anyway google Hallwang or look at their Facebook site and you will see all kinds of information, and contact details. But most of all they are truly professional and very caring and test you before giving you any medicine, so it's not the same for everyone.
i hope I have been helpful. Oh and the oncologist there who I saw is Dr Nolting, he does research and is the most caring doctor I have ever met.
hugs to you
airlie
Member
9 years ago
Hi Giedre. I was diagnosed her2+, grade and stage 3.
Had dbl mastectomy 6 mths chemo and have 4 herceptin left. Can you give a ball park in cost please. Thanks Airlie
Giedre
Member
9 years ago
Yes KatyJoy they really do try very hard in Germany at Hallwang where I was, with all kinds of cancers. They have a Facebook site and just a few days ago they put up a young man from Australia who has had great success with sarcoma. If you google Hallwang facebook you can see his story. Hallwang does give me hope, but it's very far to travel and they are the loveliest people at Hallwang as well. Good luck with the eliminate trial!
KatyJoy
Member
9 years ago
Giedre, the Penelope B trial is a worldwide study undertaken by the German breast group, they are doing great things for breast cancer in Germany! Good luck with your immunotherapy. Cheers, Kate x
KatyJoy
Member
9 years ago
Hi brightspace, I think this is the drug they're using in the Penelope B clinical trial. I was going to be involved in this study but am doing one called eliminate instead. Both trials are for er/pr +Ve her 2-Ve bc.
brightspace
Member
9 years ago
Palbociclib is a chemotherapy drug