Hi everyone, Im new to the forum and just wanted to introduce myself!!
Well Im Sue, 36 and live in wirral.
I was dx in 2002, had a mastectomy and tamoxifen, then in 2004 had recurrance to lymph nodes (same side) had total removal with 17/20 nodes affected, had Epi and CMF then 4 weeks of rads, Zoladex and Femara, then in 2005 had a random bloods done - nurse thought had to be checked for Zoladex! - Thank God because liver function wasnt quite right, had all scans done and mets were found in Liver, have since had taxotere and Vinoralbine, then Faslodex and now Xeloda…
Sorry to be so long winded just thought Id get it out in one go!!!
Have looking for info on SIRT and Avastin and was pointed in this direction, felt a bit rude reading your threads and not introducing myself!!!
Anyway ladies, take care, hope to chat to you soon
Sue xx
Hi Sue
And welcome! I too was dx in 2002 and had mastectomy, reconstruction and FEC, followed by tamoxifen and then Arimidex. Learnt last year that it had spread to my liver and had Avastin and Taxol from July to Dec. So may be able to help with any queries you have about Avastin… SIRT I know little about although there is a thread about it you might have read - sounds as if it is only used when chemo stops working.
Do post any of your questions - reading the threads helps but I’ve found posting specific queries/concerns helps even more!
Kay xx
Hi Sue,
Sorry to hear you have to join us but welcome. You’ve been through the mill already. I have liver mets dx last july, live in Conwy had 5fu, epirubucin zoladex and femara so far.
Just to say we are organising a meet in either Liverpool or Manchester if you feel like it, nothing arranged yet
Cheers Allie
Hi Sue
Welcome to the discussion forums, you may also find the live chat session for people diagnosed with secondary breast cancer of interest. It is an on-line session where you are able to talk to others who may be in a similar situation to yourself.
It is held every Tuesday evening from 8.30pm to 9.30pm and details can be found at breastcancercare.org.uk//content.php?page_id=6218
If you are interested please feel free to join the next session tomorrow evening.
I hope you find this helpful.
Kind regards
Katie
Hi Sue
I’d like to extend a welcome too! Please feel that you can post about anything on the forum - it really does put your mind at rest - there is an awful lot of experience and wise words to be found here.
Whereabouts on The Wirral are you? I’m in Ellesmere Port.
Original dx in June 2000, WLE, CMF chemo, rads, Zoladex and Tamoxifen. DX with bone mets in August 2007 - 2 days after having my baby boy. Receive my treatment at Countess of Chester - via the Oncology Team from Clatterbridge.
Take care
Anne xx
hello suecco,
Just wanted to say and welcome. You will find loads of help and support on here. Everyone is great and it is really good that we have this. You will have to join in the live chats on Tuesday nights.
I have bone and lung secondaries diagnosed last June after 10 years remission. Originally diagnosed just over 10 years ago at 28.
Hope you are doing OK
Fay :o)
Hi I’m new too! Have spent last couple of weeks scanning the forums and not being brave enough to admit or share.
Bone mets found Nov 2007…i spine, ribs and hips.
I was 8 months pregnant when first diagnosed in 2004. Mastectomy, chemo, radiotherapy just wasn’t enough… I foolishly thought that I had ‘done’ cancer.
I’m adusting well to new medication -zoladex, arimidex and bondronat tabs.
Life goes on, my boy certainly makes sure of that!
I look forward to sharing more with you guys.
Love and hugs
Lou x
Hi Lou and welcome too!
My bony mets are similar to yours - pelvic/lumbar region and spot on ribs (both hips now) - also a small patch about 4" down from nape of neck.
I too thought that I had ‘done’ cancer and that if it came back, then it would be another boobie lump!!
I am having my ovaries out in April and shall be transferring to Arimidex - had my last Zoladex today - yippee!!!
I have 4-weekly Zometa ivs.
Please remember that we are all here for each other so, if there is absolutely anything you would like to ask/share, then please do
Love and best wishes
Anne xx
Hi Lou and Suecco
Welcome to the club no one wants to join. But though that’s true for all of us the support on this site is amazing. When you get tired of being positive for the sake of family and friends and just need to share your fears and worries there is always someone who will answer you on here. And you get the occasional good laugh too…
I had Avastin with taxotere and one or the other had some effect as my tumours (breast, liver and lungs) shrank by about half. They’ve stopped the avastin for the time being (I think they prefer to give it in tandem with one of the taxanes) and I’m on Arimidex which is, for the moment at least, doing the job. Had no side effects to speak of with the Avastin, though not sure I’d have noticed given the side effects of the tax!
I’m constantly amazed by how young so many of us are. Not me - I’m 55 - but why so many women in their 30s and 40s? Has this always been the case or is in a new phenomenon?
love to all
Manon
Do you know what, I was thinking the same thing re: age, most ladies seem to be late 30’s to 50’s this seems pretty young to me, I was also thinking is this the computer literate age??? maybe because older ladies have grown up families who offer support and they dont feel the need for virtual support??? I visit a USA site and was amazed at the ages of women there too, 40’s seem to be the average across the board.
Who knows!
Im pleased your treatment is working for you, it really is great to hear a positive story and the treatments are working for you, as with most of us we have to try a few to find the one that works!
So Avastin is readily available?? some ladies in the US seem to be pairing it with Xeloda which Im on at the minute, just looking for alternatives if this doesnt do the trick for me.
By the way 55 isnt old!!! your only a spring chicken yet!!
Hugs
Sue xx
Hi Sue
Availability of Avastin is a bit of a hot issue. I got it via BUPA but they took some persuading (and my onc is running a trial which might have helped) I don’t think anyone gets it on the NHS. I read the US sites too and though a lot of women are getting it the FDA seems to have mixed feelings about it.
Thanks for the spring chicken comment. Funny isn’t it, before dx I was thinking of myself as getting older, looking at retirement, etc. Not at all worried about age but thinking I was at the older end of the spectrum. But once you hear that you have a limited life expectancy it makes you feel really young - far too young to die! ironic.
Barbara x
Hi Sue, Hi Lou
I also have secondaries, I’m 39 and I find lots of comfort in this site. I’m not far from you Sue, I live in Crosby, I’m being treated by a team from Clatterbridge. Sorry you have both had to join us and hope you both find comfort in these forums.
Take Care
Liz x
Hello ladies!
I am so glad that I have found this thread. I have just been told that I have secondaries and feel as though the world has dropped on me. I was first diagnosed in July 2000 at the age of 44 with a grade 3 tumour which hadn’t spread to the glands but had surgery, chemo and radiotherapy. After treatment I moved to Nantwich and started a new life which I love and now feel has been taken away from me. I have secondaries in my bones, liver and lungs which I have been told is treatable and I start chemo at Christies on Friday.
Have any of you managed to go to work whilst having treatment? I live on my own and although I have a supportive family and friends feel I want as normal a life as possible.
I am trying to stay positive and happy but am finding it difficult so would appreciate any help.
Val x
Hi Pegrum,
So sorry you’ve had to join us, I’m nearly 42 and have liver mets dx last July I had had lumpectomy in June. I had chemo last August Epirubicin and continuous 5FU via a pump strapped to me!! It was hard at first but I had been quite poorly with an ascites and jaundice. Got used to the chemo and started going back to work about a month into it. I have my own business but got some really good staff. There’s a lot of girls on the board with secondaries who are continuing to work some may be working part time but it helps get you out of the house and motivated I think.
All chemo’s are different and affect every one differently. do you know which one you will be having?
We are hoping to organise a meet in the North West soon-either Manchester or Liverpool, if you feel like being sociable.
Take care and good luck for Friday
Allie
Thank you Allie. After reading your comments I think I smiled for the first time today! I feel more positive now that I now there is life after secondaries. I’m not sure which chemo I shall be on as my oncologist has just decided to change it. I shall keep dipping into the forum now but bye for now.
Val x
Hi Val
I’m so sorry to hear you’ve been dx with secondaries I hope you find comfort and strength from these forums I know I do. I haven’t gone back to work yet but thats been through choice, it would have been hard but managable for me to go back while having treatment but having a young family I didn’t want to. (I may go back later in the year I’ll see how things go) but I know from reading these threads that lots of people with secondaries have continued working.
Hope all goes well with the treatment when it does start, take care,
Liz x
Hi val,
I’ve worked through most of my treatments, but had to give up last year, when I couldnt plan more than 4 weeks ahead because of scans etc and as i worked with special needs kids and the risk of catching childrens usual bugs like chicken pox etc and infection through scratches and bites etc I thought it best to stand down, I still go in and help out on the admin side of things when Im needed so I didnt cut the ties completely.
Let us know what treatments your going to have, you’ll get lots of info from the ladies here who are great!
Take care
Sue
Hi Lou, Suecco and Pegrum (if you are still logging on)
Just a quick hello from another ‘spring chicken’ (57). You made me smile as I just logged on having moved our large bed to hoover, got two loads of washing on and cleaned the windows (2 sets) and it is only 10.15am - not bad for someone 5 years on from dx of liver secondaries! Good luck with your treatments.
Blondie
Me again
I have just been thinking about my comments - my 89 year old mother-in-law would have got through the whole house by now so perhaps I shouldn’t crow.
Blondie
Bloody Hell Blondie,
Call round to mine my windows are filthy, been tilting the blinds so I dont have to look at them (as cant see through them!!) Come to mention it Ive still got tonnes of teenagers washing sitting there waiting to be done too!!!
As my daughter would say CBA!!!