Her 2 ladies can you offer any desperately needed advice?
Hi ladies I have a huge dilemma. As anyone who has read my posts I am on herceptin and perjeta for ever. Unfortunately I have down the past 10 months suffered terribly with a severe skin reaction. No creams no antihistermines dermatologists or many other treatments have helped. If finally appears its an immune response my body has reacted with that affects my mast cells and produces an extreme over abundance of histermine causing severe burning and itching and many many sleepless nights in ice and tears. Slowing down infusions tablets before trying the herceptin alone and visa versa no avail even extending 3 weekly infusions to a month and 6 weeks. So here I am..... Do I stop treatment ? I AM SCARED STIFF i can not live like this anymore however sadly the dual treatment has worked wonders for me elimination of liver tumors all 12 and 4 spinal mets . HELP please? My oncologist says well it' your choice? I DO NOT WANT TO DIE I am to young.
Immunotherapy for er+pr+ HER2-
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.
advanced breast cancer - could have been caught early
Hello I was diagnosed with advanced breast cancer to the liver and hip (non weight baring on right leg) in April. I am ER/PR+ HER2 + and was given a prognosis of 2 years to live. I have two kids aged 11 and 13. Three years ago I had a mamogram and ultrasound which shows that there was a tumour in the same location as the tumour today (much bigger today). My specialist at the time told me that I had cysts in the breast and nothing to worry about. She told me that I did not need to do a mamogram every 2 years because of my age and that i could leave it till I was much older (37 at the time) I left her office feeling confident and relieved. Now I am crushed and terrified of the prognosis which has been given as I need to see my kids grow up into adults. I have had 2 sessions of cemo (4 to go) and then scheduled to be on herceptin and perjera indefinitely. I have a CT scan scheduled for next week to see if there is any improvement. I am terrified and can only hope that the treatment works. I was wondering if there are other women who have survived this beyond 2,5,10 years and how they are able to stay positive and not let anxiety, depression anger bring them down.
Starting Chemo next week
My first diagnosis of Cancer was secondaries in the liver. That was on 16/9. I have been through plenty of tests in the past month, u/s, CT, MRI, endoscopy and liver biopsy. I do know that my liver tumours have grown and multiplied between scans within 3 weeks of each other. I have HER2 positive cancer in my left breast which is tiny but has spread aggressively in my liver. I have my first oncologist appt. Monday and assume port will be put in midweek, then Chemo. This has all come as a huge surprise to me, I have finished up work for now because I was a new employee and couldn't know what time off I was needing for tests then ongoing treatment which I believe will be aggressive (but not sure what this means yet). So sitting at home contemplating, coping most of the time but still scared.
Afinitor to be added to the PBS
I am pleased to let you know that the breast cancer drug Afinitor (everolimus) will be added to the PBS on 1 June this year. Afinitor is a drug for women with hormone-receptor positive, HER2-negative secondary breast cancer. It is used with Aromasin (exemestane) when the breast cancer has stopped responding to hormone therapy alone. Afinitor is a tablet, so doesn't have many of the side effects of IV chemotherapy (which is the alternative treatment). It also means you can take it at home, instead of having to go to a hospital or oncology unit. Afinitor has been available in Australia since 2012, but has not been listed on the PBS. We know some women are already receiving treatment with it. You can read BCNA's submission in support of PBS-listing of Afinitor in the Submissions and reviews pages of our website. You can also read our media statement in the News pages. Take care everyone, Kathy
Helping Mum
Hi Everybody I posted a few weeks ago about my 81 year old mother who had been diagnosed with HER2 positive (hormone negative) breast cancer. She had a left breast mastectomy on 8 January. We have been to the oncologist and after a lot of tests, we were told today that she has secondaries in her lungs. I am gutted. She has gone from an early breast cancer diagnosis to advanced breast cancer in the blink of an eye. He is going to treat her with chemo and Herceptin and is very optomistic that she will respond well to it and will be treating her for "a long time to come". Of course my brain is running away and saying what if she doesn't respond. I know I won't have her forever but would like a few more quality years with her. Has anyone had this type of diagnosis and had success with Herceptin. We are hoping she starts treatment on Tuesday and I know it is going to be a hard road for her. I look at her and can't believe she has cancer as she looks so well. Any comments/suggestions of ways to help her would be appreciated. I am my elderly parents main support system and like most elderly people, they don't want to accept outside help. Thank you in advance
A little more Black and white
So the follow up scan cleared things up for us - the tumors are growing slowly on tdm1. So the drug is no magic bullet for me like it has been for some others. The progression is mm but enough to show a trend and reason to be taken off the trial. I expected it so I'm ok but my emotions have still been flat. You see with every progression there is the feeling that you are a little further down the slope, that little bit further, harder to claw back up. I've always, felt, deep down that I can handle this. That this disease can be managed for some time as a chronic illness while of course never forgetting the possibility of the miracle. (I know living breathing miracles, I could be one!) that I could influence my outcome with great approach to diet, exercise, spiritual and mental health in addition to great medicine. For the first time I feel real doubt. This, I suspect is because I have started to become symptomatic. Nothing major but it's there, the infrequent dry cough, the funny feeling in a certain part of my chest. Yes, I can still do a 1.2k ocean swim (slowly but determinedly) but there is really no way of still saying its hay fever or the post viral cough - it's the mets. My boy starts prep in a few weeks. The very thought of having to leave early breaks my heart. The thoughts of him and my girls negotiating their journey to adulthood in the absence of their mother tears me up. However, we are not unique. Families have coped with death premature and otherwise since time began. It is how life works - you are born, you live and you die - none of us a guaranteed tomorrow. Cliche and shallow comfort. I am forever telling them how they hold me in their heart - the girls get it, my boy stares blankly. I was sleeping the other afternoon and just stirring when he came into my room, quietly hopped on the bed kissed my cheek and jumped off to play with his lego. I just hope he remembers how much he loved me and I him. It is thinking of how this is just how life works that brings me back to today. I am here right now. Busily still working on those photos I've talked about before - (sometimes being a photographer is a curse) - cherishing the memories of our Itslian trip. Preparing everyone for a return to and commencement of schooling, enjoying the holidays, summer sun, beach, doing nothing time, reading (3novels so far and loads of trashy mags) I am glad I come back to this - the wallowing never last long but it would be false to say it isn't there - to only talk of the "up" stuff that makes everyone feel better. I have a number of friends going through rough times dealing with their cancer at the moment. I have friends with few options left, with pain and disability - I feel sad for them, for their families, for me for my family. So there is a plan. I have been fortunate to be granted compassionate access to the drug pertuzamab (perjeta) which is a monoclonal antibody used in combination with herceptin and chemotherapy - it is a drug for her2 positive women that aims to further block the Her family pathway. There had been a thought all along that in my case, blocking her2 with herceptin has never been enough, that something takes over to continue to drive the growth of the cancer. I will be one of very few australian women who have access - I am beyond grateful. (It is highly unlikely that this drug will be available at oncologist's discretion for some time - there are still significant limits on the use of herceptin snd tykerb)I will try it in combination with a chemotherapy. It will take a few weeks to come into the country so in the meantime I will start the herceptin and chemo and in my second cycle add the perjeta. I will continue to ficus on and revamp my lifestyle routine to cope with the new drugs, I will continue to swim to strengthen my aerobic fitness (I'm registered to swim the Mt Martha Australia Day Swim), I will cycle and walk and meditate and hopefully find a yoga instructor I am happy with. I will continue my accupuncture and TCM. I will continue to hope. I will continue to live. I will continue to love. May we all have health and love in 2013.TDM1
I started the Th3resa clinical trial on Thursday - I was randomised to receive the study drug (thank GOD) which is TDM1. This is a drug for Her2 Positive women - currently it is mainly being researched in women with ABC but I believe there are some adjuvant trials happening in the US. It is being put up for FDA approval toward the end of the year I believe based on the promising results from the Emilia trial. It has been called a "smart bomb" in the press - effectively the Herceptin (T) is combined with the chemo (DM1) in the same drug. The Herceptin seeks out the cancer cells which over-express Her2 and then delivers the "payload - chemo" to the cells. The upside is fewer side effects from the treatment as the drug does little damage to healthy cells. I have had my first does on Thursday - over 90mins first time. My side effects so far are minimal but mainly flu like - mild temp, aches and pains, very mild nausea.low appetite and fatigue. Today is Day4 and I am feeling pretty good just a little achy. I will have my second dose in three weeks - 60 mins this time and then eventually 30 mins. I will be scanned every 6 weeks. Who knows if it will work for me - I can only hope. The disease while I was away decided it quite liked not having a chemo agent in the mix and despite me feeling amazing my pretrial scans showed significant progression but the disease is still confined to my lungs and now my chest nodes. This drug has had amazing results in some and done nothing for others so I am hoping I fit into the former category or at the very worst keep the disease stable for some time. If anyone else reading this is on this trial or other TDM1 trials I would be interested in hearing of your experiences. Much love to you all, Amanda xx
Secondary Survivor Stories
Hi all, On the request of my friend, I am looking for survival stories. On March 30th, 2011 my friend Kimberly had a routine mammogram which came back negative. Three weeks later she did a self check and found a lump. A week after that she was diagnosed with Stage 2 breast cancer....three weeks after that, Stage four invasive ductal carcinoma which has spread to the lungs. It's been a crazy three months and she is now on a chemo and herceptin, HER2 positive and those are the facts. But the real story here is my friend is afraid and living with so much incertainty. I want to be able to give her more hope than simple platitudes of "stay strong and postitve". That's what everyone says and frankly, it's starting to piss her off. I would to give her that rare gift of hope and was taken here by a very nice nurse. Any suggestions would be very appreciated. I thank you, each and every one for your time and consideration of a woman who shares your stories.