Hi everyone. Some of you may remember me, I’ve been around for a while (04) Just been diagnosed with brain mets, I’m devastated. I was doing so well on Herceptin although I’ve only recently been told Herceptin doesn’t reach the brain???. I’m at rock bottom at the moment and desperate to hang on to something. The tumor was operable and has been removed (half inch) and I’m about to start on full head radio therapy so I guess that’s something I suppose. Is there anyone out there that has or is going through something similar. Desperate to hear from you.
so sorry you are going through it at the mo… I know people have had wbr on the secondaries site… I have seen post there I’m sure so hopefully someone will get back to you if you post on there
I would also try the US website her2support.org. The woman who runs the site with her husband first had brain mets many years ago and there are quite a few long-time regulars with brain mets on the site.
Dear Paula,
Just wanted to say I am so sorry to hear your news I wish you al the best and I hope you get intouch with others who are going through what you are
love clairemm x x
I would also recommend the US web-site which has given me a lot of encouragement over the last two weeks. I was diagnosed with primary breast cancer in July 2003 and following chemo and radiotherapy joined the hera trial and received herceptin for 12 months until April 2005. Everything was fine until March 2006 and in June 2006 I was diagnosed with brain mets. I was totally unaware of the blood/brain barrier issue and that herceptin could fail us in this way. I had whole brain radiation after which I felt about 90years old for six months! Having come through that I had more symptons in March this year and immediately had surgery to remove the brain met. The recovery from surgery was far less difficult than the radiotherapy. First MRI after the op ( 12weeks later ) was clear but my second one two weeks ago showed more mets appearing. Needless to say this rollercoaster is not one that I really want to be on.
I am seeing a new oncologist this afternoon to discuss my possible inclusion in a trial for lapatinib (Tykerb) which is my main focus at the minute. The information and experiences that I have read on the US site have given me hope in this “new” drug. I am very frustrated however that, from reading the US site, the progress that appears to be made over there and the knowledge and use of the latest drugs and surgery/radiotherapy techniques is ahead of our care in this country. Tykerb has been in use there since the beginning of this year and yet is not yet available here.
I am taking as much knowledge from others as possible at the moment to ensure that I can be as well informed as possible in pursuing the best treatment that I can get and any information from anyone else going through this or already taking lapatinib would be gratefully received.
Keep believing you can get through this and enjoy life more for it.
Terri, I would like to thank-you for the information you gave me, I would really like to talk with you but I’m exhausted, just got back from Herceptin and I’m on steroids but I can’t wait to hear more, maybe we could work on this together? I have been devastated since being given the news, then I had a meeting with one of my oncs. yesterday and he said a few ‘unexpected’ interesting things, but then having read what you have said I’m already beginning to doubt him. I have always remained a realist throughout this journey and have been astounded at some of the things my oncologists have, or, have not told me. Why did they not operate on your first diagnosis? Did it reappear in the same place? Did it reappear again later on after a clear scan? Look forward to speaking to you soon, I’m back on a mission! Thankyou.
I have asked you a few questions over the past two days but don’t seem to be getting a response. You mentioned that I was the only other person you had come across who had been operated on. Did you read about what my onc said, about it not returning in the same place once it had been removed, and in his experience, it doesn’t return again in the brain. I’m finding it hard to get my head around that kind of information, as much as I would like to believe him, it just doesn’t seem true. He said it will undoubtadly come back in another part of my body but at the moment I’m still all clear due to Herceptin, so I am trying to be as positive as I an be. Because it has been removed I am trying to give myself the 'all clear for now", if you now what I mean. How do you feel about having been lucky enough to have it removed and are you able to ask your onc any similar questions?
I really hope your treatment is successful for you.
Regarding driving after brain mets treatment (there are two other threads about this) more hope of getting your licence back seemed to be given to those who had surgical removal? If you decide to ask for a review 12 months after surgery, do let us know how you get on?
I currently have mets, but not brain mets and the prospect of ever losing my driving licence and in the process, my independence, totally terrifies me.
I’d like to see The Secondaries Taskforce take on the DVLA to find out if ANYONE ever gets their licence back after brain mets and if so, under what circumstances. Unfortunately, it does not appear to be on their “to do” list.
interesting point. Imight just look into it. If my onc can back mr up with his theory I might just find a way around it, apply for my licence to be re-newed every 3 months or so. who knows, it’s worth a try.