I was amazed and rather humbled to see that there are people out there who want to know how I am faring. I am pleased to report that all is going well and I am now eleven years on from my secondary diagnosis (liver and bone) in early 2003 and still disease free.
In December 2013 I completed 10 years on Herceptin and I was going to wait until March to post as then I will be having my 180th injection. Now that really feels like a score to celebrate - one hundred and eighty and not out! It is amazing that my veins haven’t packed in long ago.
We may be going over to the sub-cut Herceptin shortly but my hopes for independence don’t look as if they are going to materialise any time soon. The sub-cut has to be administered in hospital, by nurses and still the long wait after the injection to ensure you are OK. Maybe when things settle down the rules will become less restrictive and I can get my, dreamt of, escape/holiday of more than three weeks.
I no longer feel such a rarity, there are so many more of you out there doing really well on Herceptin on its own and Herceptin in combination with other drugs. It is a privilege to be part of a growing group.
Hello Blondie
Your post is just what I needed to read ! What an inspiration you are ! Only diagnosed b/c November 2013 . Secondaries jan 2014 so very early days for me . Had very low day today and your story has made me feel more possitive and know life can carry on . X
Geordiex
Thanks for that - I will take it to hospital with me next week to she them that you aren’t having to wait after your injection. I was definitely told that I will have to ‘do time’ afterwards as that was the rules (for the time being) Interesting that different trusts can have different rules as I thought it was the pharmaceutical companies that set the conditions for use.
Blondie
Lovely to hear from you blondie and although I know there are many ladies now doing well on Herceptin it is always good to hear it from the person themselves.I am a year out now from dx and 6 months NED (small met to liver) now taking Herceptin,Pertuzumab and Tamoxifen. I cant tell you how much your posts have helped me over the past year.Long may NED (or cure) continue.xx
I thought I would join in and say hi to Blondie It is lovely to hear from you and to know you are still keeping well and going strong. I still remember the day (how long ago was it?) when you were at my place with a group of others - sitting round the pond and enjoying the the company and chat. I was dx with 2ndaries a year or so before you, but started on Herceptin a month after you. I can’t remember what number I am up to but the nurses at the Day Unit always remind me what number it is - I think they said 174 last time. I must say I find the regime of herceptin & zometa so easy and side effect free compared with the 13 years with primaries and chemotherapies including MMM, ECF, Taxotere, Capecitabine, Navelbine before they discovered I was her2+++. We never know what is just around the corner. Hope to find you posting again this time next year LOL.
Hi. my mum has recently been diognosed with secondary breast cancer, she is doing very well but there is days where we both feel sad and worried about what is next… reading this story made me feel very positive and i have faith in the treatment my mum is having. When you have bad days how do you cope? what is the best thing to do:smileyhappy: hope to hear back from you april x
Along with the support you will find here, you and your Mum are welcome to call our helpliners for further emotional and practical support. Lines are open weekdays 9-5 and Saturday 10-2 on 0808 800 6000
Here’s some further secondary support and information from BCC which you may both find helpful:
Hi blondie and ladies
I would like to share that i feel super from getting the best news ever!!!
I had my 3 month scan the other day and my oncologist was delighted to tell me that my scan was completely clear
Even my liver mets cannot be seen
This was amazing as its only been a year of chemo and herceptin im delighted!!!
Thanks blondie with your story and actually gwtting results like this it has made me feel great and positive that i can hav a long beautiful future
much love xxxxx
Thanks roxy
Ellie dog my fingers are crossed for you let me know results
wel its def good news they feel confident to put you on yearly scans but scary and im sure if your not ready 6 monthly still shouldnt be a problem
Xxxx
This is amazing.and very.inspiring news blonde. It is wonderful to.read yiur story.
I was wondering what happens when.herceptin stops working? It.only worked for me for a few months and I am frightened.and depressed.
Hi Blondie, just read your post…and you have given me lots of positive thoughts and confidence about the future.
I was dx in Feb with bone mets to spine, ribs and hips, such a shocker!!! Had bc in 2007.
Im 46 and a few months ago i had totally rote myself off but this forum has kept me strong
Best of luck to you and all the other lovely ladies out there
Love Janette x x x
Wow Blondie, I’ve only just seen your post! You’ve no idea how happy I am to read that you’ve been on Herceptin for 10 years. I was diagnosed with HER2 BC and lung mets in November last year. I’m doing very well, and I’m just having radiotherapy now. It’s given me so much positivity and hope to know that I have the chance to be well in 10+ years time. Hope the holiday plans get to happen one day. Wishing you many years of health and happiness. Mini xx
Hi blonde your story is amazing, my mum has been dx with liver mets and is on a 18 week taxol treatment then followed by hormone therapy I’m hoping so much that she is as respondent as you but sadly I don’t think she is HER2+. My brother is getting married June 2016 so that is our mile stone at the moment. How do you manage living day to day cause I’m struggling and find my self in tears daily and as for my mum she isn’t coping either and can’t look even a day ahead at the moment xx
Hello all. I was diagnosed on Friday with Secondary Breast Cancer in the Lymph Nodes, base of my spine and liver. Feeling slightly abandoned now but after three biopsies and a liver ultrasound I will get to meet my Oncologist on 22nd. Having been diagnosed with Breast Cancer in September 2011, treatment finished July 2012, my ongoing fundraising continues which has raised over £52,000 and I am the writer of a blog, I suddenly feel like i’m out at sea with no oars. To be honest I am terrified and scared. The only information I can find is on websites, I dont know my life expectancy, but at 45 and a single mum to a 20 year old boy, but with a new loving partner of only a year, I am slightly panicking. Reading the comments on this forum gave me some inspiration yesterday and returned my strength. If anyone has any advice or support it would be greatly appreciated.
it is so scary when you are told. Don’t I know it! However I was diagonosed 4 years ago |(almost to the day) with secondaries to my liver and 4 years on i am still fine, working full time and a good quality of life. I would keep on to your oncolgy team though to see you asap - just for your peace of mind as once you start on a treatment you will be feeling a lot more in control. By the way, you sound very young - do you have the BRACA gene do you know? as if you do there are loads of new treatments avialable to you. I am on currently a trial for BRACA carriers. I have been on it for 4 months now - very few SE’s a bit of hair loss (not much) very slight fatigue - nothing that affects my quality of life and it is working well - reducing my tumours. Also if you are estrogen positive I have heard of a new drug on a stage 3 (i think)trial that seems to work very well as well. It is called the Paloma trial and I think everyone is very excited by it. Try googling it
anyway what I am trying to say is this is not the end of the road for you. Take care Chick and let us know how you are doing SS
just forgot to say these excitng trials are as well as all the current treatment available to you - there are loads - that will hopefully keep you stable for many many years
It is lovely to hear from you and to know you are still keeping well and going strong. I still remember the day (how long ago was it?) when you were at my place with a group of others - sitting round the pond and enjoying the the company and chat. I was dx with 2ndaries a year or so before you, but started on Herceptin a month after you. I can’t remember what number I am up to but the nurses at the Day Unit always remind me what number it is - I think they said 174 last time. I must say I find the regime of herceptin & zometa so easy and side effect free compared with the 13 years with primaries and chemotherapies including MMM, ECF, Taxotere, Capecitabine, Navelbine before they discovered I was her2+++. We never know what is just around the corner. Hope to find you posting again this time next year LOL.