Immunotherapy for er+pr+ HER2-

GiedreGiedre Member Posts: 18
edited December 2016 in Metastatic breast cancer
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.
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Comments

  • socodasocoda LeumeahMember Posts: 1,461
    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
  • HelloCarolineHelloCaroline Member Posts: 47
    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
  • GiedreGiedre Member Posts: 18
    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. 
  • primekprimek Broken HillMember Posts: 3,201
    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.
  • GiedreGiedre Member Posts: 18
    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.
  • HelloCarolineHelloCaroline Member Posts: 47
    You're welcome Giedre. I understand that the policy team won't be back in the office until Jan 3rd (and then may have several queries to deal with), so please don't be concerned if you don't hear back quickly.
    Best wishes, Caroline
  • Lizzie13Lizzie13 Dragonfly Posts: 46
    Hi Giedre, the main reason that most of the trials for immunotherapy world-wide is for Triple Negative is that we have NO targeted treatment at all. Triple Negative is aggressive, fast growing and very destructive and most often attacks the young woman and has a strong correlation to BRCA gene positive therefore research is targeting this group, particularly with immunotherapy because of this. I know that most trials in Australia with immunotherapy at the moment is for Triple Negative BC mets.

  • GiedreGiedre Member Posts: 18
    Hi Lizzie13. Yes Triple Negative is very aggressive, but my thought was that there are other ways to treat cancer of all kinds, which I saw at Hallwang Clinic.  They even had success with a Triple Negative lady from France who was given up on in France.  Her name is Alice and you can see her on Hallwang Facebook site.  I just think that the Germans are very far ahead of Australia in treating cancer, mainly because they try everything according to what blood and individual tumour testing shows. I do trust the doctors at Hallwang but maybe all their treatments won't work for me, but at Hallwang everyone is treated individually.  Here we all have to take the same medicine to see if it works or not.  It's all very confusing, only thing about Hallwang is that because they have to source experimental drugs from the US it's quite expensive.  I think all drugs should be available for everyone and I understand why Australia is very cautious but maybe here the doctors could be a little more experimental with personalised individual medicine, as it's just blanket treatment for everyone.  Could be good or bad, but I just tried Hallwang, and of course I take my medicines here as well.  It's just that as I said earlier, the GP2 vaccine that I had is shown to work with faslodex which I take, you can google GP2 vaccine, and it can be used if you test positive for HLA, to which you may be positive whether you are Triple Negative or any other combination of character of cancer.    I had my own personal trial along with intense vitamin infusions and I do think it worked as my tumour markers went down and all my bloods were normal when I came home.  Maybe it will last or not.
  • brightspacebrightspace Member Posts: 168
    Yes new drug for Hormone positive her2 negative..... See palbociclib post today
  • brightspacebrightspace Member Posts: 168
    Palbociclib is a chemotherapy drug
  • KatyJoyKatyJoy Rowville victoriaMember Posts: 122
    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.
  • KatyJoyKatyJoy Rowville victoriaMember Posts: 122
    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
  • GiedreGiedre Member Posts: 18
    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!  
  • airlieairlie Member Posts: 80
    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
  • GiedreGiedre Member Posts: 18
    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
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