Eleven years on!

[Carolyn52]

Hiya glo.
Apologies ..I missed your reply as I tend to lurk on bone Mets.
I'm so glad to hear from you and hopefully things wil stabilize again for you.
Keep in touch with us here .
Hugs xxxxx

[Glo]

Hi Carolyn, mri showed further mets so steriotactic radiotherapy out, just finished 10 wbrt, all ok, just waiting for it to show some effect! Feel fine apart from being totally exhausted! Just as well I like a good sleep 💐💤💤💤

[Carolyn52]

Hiya Glo

Havent seen you posting recently and thought I would contact you through this thread. You had a MRI scan last time and were waiting for results and a treament plan.

Hugs xxx 

[Glo]

Hi alockyer,
I'm happy to chat and keep in touch, maybe you should look at some of the other threads and posts in this forum. You will find everyone a great support and a wealth of knowledge amongst the members!

[alockyer]

Hi Glo. Just joined this site, and seen your reply to Blondie. Your diagnosis and treatment is very similar to me, so thought I'd send you a quick message, and thought maybe we could keep in touch? I'm struggling to find anyone to talk to in my area, and feeling slightly isolated. Hope you are keeping well since your post, x

[dennymac]

Blondie you are an inspiration! When my oncologist told me in January I had not only primary but secondary diagnosis with spread to my lungs and told me that people have lived many years I did think she was being overly enthusiastic. I keep coming on here and reading your story and have been waiting for the eleven years update! I hope that my oncologist is right and I have as much success as you have had.  You give us all hope, especially people as newly diagnosed as me xxx Here's to ANOTHER 11 years!

[Downbutnotout]

Brilliant news TARA. Thanks for sharing. It's so nice to hear something good.

X

[Mets2012]

Which chemo?

[TARA_K]

I had 1 week of radiotherapy on my neck then 6 treatments of docetaxol and herceptin at the same time. They have told me I will get herceptin injections into my thigh every 3 weeks for life. I'm very lucky I haven't had many side effects from herceptin.

[Glo]

That's great news Tara! What treatment have you been on since finishing chemo in March? I have just finished 12 sessions of paclitaxol, with a good response (mets as you in lungs, liver and bones) and wondering what that will give me to help it stay stable. See onc next Monday. I am ER+ but as far as I know HER-.
Glo xx

[rosie53]

That's fantastic news Tara!!!!!!! Really pleased for you.

Hugs Janette xxxxxxx 

[springsummer]

Congratulations Tara!  You certainly are living with Cancer!!  It bucks me up to hear such good news from people. Can I ask what chemo you were on? I am between treatments at the moment and they are going to decide next week what to  give me. I may mention yours if it is comptatible with mine cancer SS 

[TARA_K]

Hi everyone, I have found this forum very helpful and supportive, thank you. I just wanted to post some good news to give others hope. I finished my chemo in March 2015 having received the news  in October 2014 that my breast cancer had returned after 6 years clear and that I now had secondaries in my lungs, liver and bones ( all this news 5 weeks after getting married). Well last week I had my first CT scan since finishing chemo and today my oncologist told me that I have an NED in my liver, and a good improvement in my bones and a significant improvement in my lungs! I was praying for a "stable" and didn't expect such great news.  My new saying to everyone is " I'm living with cancer NOT dying from it.

[fergal_jay]

I always pop on here and read blondies post when I feel down. Mum was diagnosed with secondary breast cancer in November and is her2+ she had an allergic reaction to docetaxol so hasn't had the usual chemo treatment but was accepted to receive pertuzumab and along with herceptin and a hormone treatment is so far responding well. But of a concern on last scan of an enlarged ovary and have results of another scan on Thursday. Keeping fingers crossed it was enlarged due to her going through menopause and is nothing to worry about. Would love to see her get news of NED one day and this thread helps me believe it may be possible to have my mum for a long long time to come.

[Sheila]

Very inspiring just what i needed to hear x

[Sheila]

Hi fine your message very inspiring may i keep in touch with you x

[Mermaid007]

Hello Chick,
I was diagnosed 6 months Ago with widespread bone mets. The ladies on here are a lifeline and very supportive. The advice they gave me was true.... Be kind to yourself and once you see your oncologist and get a treatment plan in order you will feel better. The shock at the moment is overwhelming for you but there is much treatment out there and a lot more on the horizon.... Stay strong xxx

[belinda]

Hi chick and everyone, this is a supportive place, whatever treatment you are having there are usually a number of us who have been there before and can offer support and advice. I was diagnosed in my early 40's with bone mets from the start. Twelve years on I have other mets but I'm still here. Sorry you have to join us but welcome, you are not alone. X

[Sarn123]

Hi chick sorry to hear your news but as said in previous messages you ve come to the right place lots of really helpful advise off ladies who have walked the walk, and we re all wise and well informed as I too am living with mets to liver, lung and many bone mets my cancer returned almost 4 years ago and like others have said I still live a great life! It's a very scary time for you right now but I'm always here if you just need a chat, thinking of you love sarn123 xxx

[2catlady]

Hi,chick,so sorry you are joining us but we are a very friendly supportive bunch.
We all understand how you feel as we've all been there.
We all tend to hang our in the bone mets thread regardless of where mets are. It's easy to find and we keep an eye on each other.
We even have a laugh and a bit of silliness in the cyber cafe.

Ask us anything as there's a wealth of information ,support and advice among us all.
Nobody can tell you your life expectancy not even your onc. So please don't Google it's out of date. Our Belinda is 12 years and going strong.

When you get your treatment plan you will feel a bit more in control.

Take one day at a time,it does get easier . But we all have wobbles and that's when these lovely ladies help. I consider myself very lucky to know and call the ladies on here friends.
Huge hugs,Helen xxxxx

[rosie53]

Hi Chick, sorry you have had to join us but I want to welcome you, we are a friendly bunch and are always on hand to help you through this horrible scary disease.

I'm 47, primary 2007 and dx last March mets to hips, ribs and spine, it's a very scary place when first dx please give yourself time to take it all in try not to think too far ahead. I'm sure you will feel more in control once you see your oncologist and start a treatment plan.

Please feel free to ask us any questions there is always someone on hand to help.

Hugs Janette xxxx 

[springsummer]

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

[springsummer]

Hello chick

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

[June_BCC]

Hello Chick

Welcome to the forums, this must be very difficult time for you.  I’m sure other users will be along to support you soon. 

In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes

June, moderator

[Chick]

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.

Thank you x

[lalie]

Hi blondie, it's great to hear such inspiring stories as yours. I am a really positive person but was knocked back last week by my recent scan results. In 2007 I had a mastectomy I was clear till 2013 when it appeared in my liver and bones . I was put on chemo tablet form but this did not work , and my scan showed , thickening in the abdomen and fluid on the lungs, I then had taxol chemo , which reduced my tumours by half and all was stable, I was taking letrozole for 7 months after the chemo . But all has erupted again and I'm going to start on new chemo halaven in the next 3 weeks. I worry about when the chemo finishes and they put me on another hormone tablet and how long that will keep me stable. I have read on the site about how people have been tested again to see if they have changed with regard to being her 2 pos ,neg etc. I also have noticed that i have rised lumps on my body like hives ? They go with chemo , then when it flares up again they reappear. I stupidly have not mentioned it to my onc as I keep forgetting . Sorry for long message , just needed to chat x

[TARA_K]

Hi Sarn123, I have just read your story and your an inspiration. Thank you. I had a lumpectomy in 2008 when I was 37 years old (operation and chemo, herceptin) all successful but secondaries came back in liver, lungs and bones in Nov 2014 (5 weeks after I got married) but so far so good, had radiotherapy, chemo and now on long term herceptin. Gone completely from liver, bones have calcium 'halos' around damaged area at neck and lungs have improved. I am normally a very positive person but think alot of the fears have hit me now I have finished the main treatment and wont be attending hosp as much. Only found this forum yesterday and finding it very helpful and inspiring. Thank you soooo much for your positive words.

[blondie]

Hi Sam123
Tried to send you a message but you aren't 'enabled'!
Actually I am now 12 years on (see recent post). I had spread to my liver (spots throughout my liver) and bone (my sternum) but I have been NED for years now. I have a scan on 4 June so hopefully that too will be clear - but I can never get complacent as it could come back any time.
Hope that answers your question but feel free to contact me anytime if you feel I can help.
Look after yourself!
blondie x

[Sarn123]

Sorry forgot to mention I'm hep neg🎀

[Sarn123]

Hi blonde your stories amazing could you please let me know what secondaries you had 11 years ago please. I'm 3.5 years in with lung liver and bone mets but doing really well and I do believe I ll be posting 11 years on when the time comes😎holidays keep me going lol xx

[belinda]

Bumping up for a forum user.

[Sianie]

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

[MiniBee]

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

[rosie53]

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

[Melek1]

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.

[connie889]

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

[elliedog]

Is great to hear your news Connie. I'm due for my 6 month scan soon, hoping the liver is still clear. If it is they want to move me to yearly scans. Not sure I will agree to that its a bit scarey.xx

[roxy12]

Congratulations Connie! Hope you remain well for years and years! Love Sheila. Xx

[connie889]

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

[Lucy_BCC]

Hi April, welcome to the BCC forums

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:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

[April95]

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 hope to hear back from you april x

[geordiex]

Hi Blondie hope you got sorted regarding subcut let me know x

[connie889]

One word: YAY!!!!!!!!!!!

XXXXX

[pumpkinsue]

Dear Blondie,

                         So wonderful to hear you update.  Here's to another 11.  I say, I  wish herceptin can work as well for everyone.  There are so many inspirational women on this site.  It is hard to imagine 174 or 180 doses of herceptin although I would like to.  I have only had 12 herceptin and perjeta but would like to think it is possible.

I would also like to thank Dawn and Belinda for your posts! Again they are so inspiring!

Best wishes to all. Here's to the spring!

Sue XX

[nicky08]

Hi Blondie

Just to let you know that I met a lady at my local hospital who is probably up to the same number as you with Herceptin.  It was her first sub cutaneous one and they were keeping her in for a few hours observation for this first one, although they did release her early once she had been 'observed' for a bit.

Great to hear your update, very inspiring for all old and new secondary HER+ ladies.

Nicky x

[dawnhc]

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.

Dawn

xx

[elliedog]

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

[blondie]

Wow that was quick! I will pass that on
Blondie

[geordiex]

definately no waiting and the thigh is the best place so it disperses quickly ,Newcastle was apparently the first anywhere to give subcut for secondaries so we are very lucky ,anyone new to herceptin has to do the 6 hour wait afterwards ,still affects the heart the same all side effects as the IV route xx