Celebrate

[2catlady]

Thank you,everyone. I did have a huge piece of carrot cake and a green tea for balance lol xxxxx
Good luck for your scan,smartie xxx have a fantastic time in Tenerife too.
Huge hugs,Helen

[Smartie]

Great news Helen and Anne, and you too Nicky! My scan is 7th March to see if Cape is working so keeping my fingers crossed, I have already booked a week away in Tenerife for the end of March, figure even if it's bad news it will still cheer me up. So much better when you have something to look forward to so get that holiday booked!
Best wishes to all
Smartie x

[nicky08]

Great news Helen and Anne, it is nice to hear the good stories rather than the not so good ones, keeps us all going when life is pretty tough.
Thanks again, especially to Liz and Jacqui from our little support group in Hants - I'm sure you both get as much from our regular meet ups as I do and look forward to seeing you later this month.
Nicky x

[elliedog]

Great news Helen.Hope your celebrating with your slice of cake.xx

[Lynnq]

That's good news Helen. So pleased for you!

[2catlady]

Hi,all,my tumour markers have not gone up,yippee! First time in 7 months. My onc is being cautious as he says they have to not go up next time too. I'm sticking with letrozole for the next few weeks till I see him. But I'm sooooo happy. Off to celebrate with perhaps a slice of cake with friends.
Huge hugs to all the lovely ladies,Helen xxxxx

[elliedog]

Thanks Anne its good news to hear for someone like me dx nearly a year ago with both primary and secondaries. I'm also 44 this year Feb 12th.xx

[Lucy21]

Hello AnneS
Wow what an inspirational story ! Especially for us recently diagnosed with secondaries ! Still finding things extremely emotional and raw ! Thankyou for sharing this , has made me feel better and that there is hope after the devastating news I received only a month ago x

[AnneS]

Hi all,

I don't come on here much these days - too busy living life to the full!!

I thrilled to be about to celebrate my 44th birthday next Saturday - I was diagnosed with my primary at 32 in December 2002,primary recurrance April 2007 and secondaries Feb 22nd 2008 so never dreamed nearly 6 years ago I'd still be here now and active and full of zest for life!

I'm on arimidex and 3 monthly zoladex injections and have 6 monthly PET scans but have been off chemo since Nov 2008 and although my immune system and energy levels are pretty crap and inconsistent I really make the most of my "good"days.

Thinking of all those struggling right now but wanted to share my good news too.

Love to all,

Anne

[NannieSpiky]

Wonderful news Nicky. You certainly deserve it after all you've been through lately but you are always so cheerful and chatty at our meet ups. Look forward to hearing about your holiday over our next cuppa and chat.
Liz x

[elliedog]

The kind of news we like to hear Nicky. Celebrate and book that holiday. Hooray!!!

[Newyork]

Really happy for you Nicky that's great news enjoy!!!!

[Angelfalls]

Yay for the Stable Mabel! Congratulations, Nicky, and happy holiday hunting!!! 🙂

[swanie]

Hurrah - great news Nicky.  Book something special and really enjoy it.

love Jacqui

[nicky08]

Aw, shucks 😉 I was posting my update to give hope to all the newbies, and not-so-newbies on the secondaries part of the forum, especially when things aren't going so well. Your comments however are an added bonus and thank you all.
Nicky x

[Mema23]

Wonderful news, get that suitcase packed and away you go x

[roxy12]

Nicky that is GREAT news. Get that holiday booked! Xx

[belinda]

Oh Nicky I'm SO pleased to read this news, a big reason to celebrate! May Capecitabine continue to work for you for a very long time. X

[2catlady]

Hi,Nicky,woo hoo to you that's FANTASTIC news.yes,get that holiday booked.
Huge hug to you,Helen xxxx

[nicky08]

Hi ladies

Just reporting back in that my CT results are in and I'm currently stable - woo hoo 

You cannot (or maybe you can!) believe how happy that makes me as I have had so many problems with my health, not just BC related, since further progresion was diagnosed last Feb. And, despite the fact I've not been able to have Herceptin (due to the other health issues) Capecitabine is continuing to work for me.

Fingers crossed that it stays this way for a while but I feel I've now earnt at least a bit of extra time and can look at booking a holiday - something we weren't able to do last year.

Good luck with everyone's treatments, hope they keep you stable as well 

Nicky x

[Lucy21]

I'm so glad I've just looked at this thread ! Feel a little more possitive already . Only few days to go till first onc appointment and finally talk about my treatment plan .

[lucinda]

it is almost 5 years since I was dx with double whammy bc + bone mets and I went to gp with a bad back! After a string of treatments I am now on capecitabine ( following spread to liver just over 12 months ago) and had my latest scan results today, seems no progression and everything holding stable so looking to book a spring/early summer holiday. Generally I have felt well since dx other than se's when on chemo  and have managed to enjoy my retirement, not the one I had planned as that did not include so many hospital visits, but i have managed to get lots of short breaks, walk to the beach most days or ride my little scooter on the days the energy levels are low, enjoy time with my baby grandson and generally just live life.

[Mema23]

Fab news Jacqui, I always tell folk that moan about getting old, that the alternative is to die young. Usually shuts them up! Hope you had some celebrations for you birthday xx

[swanie]

Hi

Celebrated my birthday last Sunday - the 6th since my primary diagnosis (a birthday present...) the last 2 have been with mets to bone and lungs.  Blow me down - I'm still here, looking forward to the next  bash thanks to Capecitabine and a pleural tap.

Do people who moan about getting older get your nose as well?!

its lovely to see so many just getting on with life - its great.  

Cheers to you all - Jacqui

[Lulu34]

Great thread... We have a similar one on facebook.

Im relatively new to the world of mets having been diagnosed 5 months ago with triple neg lung mets. But been through cancer treatments 3 times before that with two primaries and a recurrence, first diagnosed 8 years ago.

I was on the enchant trial of ganetespib for TNBC (also has an arm for her2+) which worked for 6 weeks but then started to grow so now off trial and waiting to go back on taxotere which i was in 2 years ago along with carboplatin for my recurrence.

When the tax stops working im gonna go back on carboplatin.

Still managing to continue working part time but getting more and more tired but not ready to give it up yet although might have to take a bit of sick leave with the taxotere as it was pretty harsh last time around.

I was also diagnosed with a pulmonary embolism 2 weeks ago so having to give myself daily heparin injections.

Lulu
XxX

[elliedog]

geordiex good to hear your feeling well and enjoying your Northern soul. fudgeincornwall sorry to hear the Pertuzumab hasn't completed the job but I'm sure the next treatment will. Good to hear your well and enjoying your pub lunches. Take care everyone.xx

[fudgeincornwal]

Hi All

Good to see everyone is joining in on this thread.   Great to see some having clear scans.   Unfortunately I had my scan results on Tuesday.  I was fully expecting them to be good but it was not to be, markers going up slightly so off the trial.  However I'm still celebrating as I can now get rid of the sore feet, got three weeks without anything except herceptin and then onto either TDM1 or Eribulin, apparently very few side effects with either.   I'll put it to sleep again, it'll be snoring quietly in the corner very soon!    The great thing is I'm fit and well apart from this and no symtoms at all, at least I know it's there and because of regular scans can deal with it sooner rather than later.

Another reason to celebrate.I went walking today with a group of friends, across the sand dunes at Perranporth and back along the beach, about 3-4 miles.  The sun came out and we all sat outside a pub and had lunch, boy I was hungry after all that climbing!! I'm so lucky  to live near the sea!!!

Imspiring to read your posts, Elliedog and Geordiex, hope to join you soon

love to all

xx

[geordiex]

thanks Elliedog feel well just have some neuropathy still from taxol and dry sinuses which I'm getting on top of ,but getting back to my dancing love Northern Soul and the 60's x

[elliedog]

Love it geordiex. Glad your doing well. Keep those scans nice and clear. Hope I follow in your footsteps on my next scan.xx

[geordiex]

meeting with onc today nothing to show on ct as per last one in Sept ,liver clear ,I am apparently in oncology perfection ,continue on Herceptin all started in March last year with multiple mets to liver xx

[elliedog]

Fudgeincornwal. I love your posts. I thought I was active but your way ahead of me. Its so lovely to hear someone doing well. Thanks for the info about the recon. I had my review today before my next treatment of Pertuzumab and Herceptin next week and I asked about the recon. They said they would do the recon but they like to wait 12 months after having rads so I have at least another 10 months to wait. I always have a good chat with the nurse practioner and she said that they might give me the Herceptin as a sub cut which will cut down the time I have my treatment although the Pertuzumab will still have to go through the hand. Also on the positive side they are looking at moving my scans to once a year instead of every 6 months. She said they have plenty of ladies 10 years + on Herceptin that are now only scanned once a year. So positive vibes coming from every where today LONG MAY IT LAST. Thanks again for the advice and heres to you continuing to feel so well.xx

[doodlecat]

One year and four months for me. Secondary diagnosis at the same time as primary. Spread to endemetrium, right ovary and multiple bone mets in pelvis, ribs, sacrum and spine. I look like a spotty dog in scans. Thanks Lam. Good idea to start this thread. xx

[helen44]

One year & one month from bc & bone mets diagnosis. Doing ok at the moment & living in the moment, Helen x

[Mema23]

Hi fudgeincornwall, I can do that party trick as well! It's good to hear you all having active lives. I've just gone back to work, had a pain issue for a while, but hopefully on top of that now and it's great to get back into work gossip and fun. I'd join in the Tuesday chat but it doesn't work on an ipad, but I'm sure one day the IT guys will sort it out. Love to all and hugs to any new ladies xx

[roxy12]

Hi fudgeincornwall, its good to see you back on this forum. I remember you from last year, or was it the year before? I think you were going to France for a holiday. I was posting then under name of Zola but when the forum changed I forgot my password or something and ended up having to change my name. Anyway its good to hear you are doing so well. You sound like you are doing more than me but like you I walk my dogs for about an hour or so every day, swim etc and never seem to stop. Just a bit slowed down at the moment as have just started taxotere but will be out on the moors in the morning! Take care. Sheila. X

[fudgeincornwal]

Hi All 

Great to see everyone posting on here,  Let's keep it going.   Important for anyone just diagnosed with secondaries to know there is a future!   

Sorry BCC Tuesday eve no good for me I'm always up the local pub taking part in weekly quiz!!

Wednesdays I go walking with a walking group, very often 4 - 5 miles.  That's on top of walking the dog 2-3 miles every morning.  I'm in the middle of doing up a house with hubby, been up and down a ladder painting today!  Also do Pilates on a Thursday morning.  Appts every three weeks just get in the way!  However trials are good and I actually quite enjoy my couple of hours every 3 weeks with my feet up having my Herceptin and Pertuzumab! (used to have Herceptin at home but trial protocol says it has to be at hosp.)  Oh and I have a portacath which makes life easier!   I actually feel fitter than I did 5 years ago!!

Elliedog - I remember the day I was diagnosed  and told it was chemo then mastectomy,I said to the BCN please put in my notes that I want a recon.  I had to wait after rads for almost 12 months but pestered everyone until they said yes!  LD recon, I can move the muscle in my recon so my boob goes up and down! My party trick!!  Yes it takes a little while to get back to normal, I had another 2 lipo fil ops etc. but I've never regretted it and with the right bra I have a better cleavage than before!   I was due to have an op to move things around a bit to even me up and uplift the other side, progression stopped that for a little while, but hopefully I've had good  enough results so I can go back on the list!   Yay!  

Sorry gone on a bit, but just to show I'm living an active life and feel great, I've gone through a lot but have a lot going for me in a positive way,

Love and positive vibes to everyone xxx

[June_BCC]

Hello Mrsblue

On the forum home page there are the coloured blocks for each section, the Living with Secondary Breast Cancer can be accessed from there should any user want to look at the threads. 

http://forum.breastcancercare.org.uk/

Best wishes

June

[mrsblue]

Picking up Mema23's idea that some Forum members with primary bc might also find this thread reassuring, maybe there could be a link posted somewhere, so that people who really want to read it can do so?  (BCC moderator?) I think there is a section "have I got secondary bc?" somewhere?

[Jo_BCC]

Hi all,

I don't know if you're all aware, but BCC run a Live Chat service every Tuesday evening which is dedicated to those of you with a secondary diagnosis.  The regular users there are a wonderful support to each other.  If any of you are interested I've put the link below for you to have a look at.

http://www.breastcancercare.org.uk/community/chat

Take care all,

Jo, Moderator

[elliedog]

Hi fudgeincornwal. Noticed your really positive post and saw that you had a recon after secondary dx. I am still trying to decide weather to have a recon later this year after being dx double whammey with small liver met. Some days I want to go for it and other days I think why upset my system when I feel so well. I hope you don't mind but I would love to hear your opinion as you are always so positive. Thanks xx

[Guest user]

I'm getting a lot out of this thread, I'm pleased you like it and want to contribute.
Thank you and lets keep going!!

[spikeyred]

LAM, thank you for starting this thread, I'm having a bone scan tomorrow for unexplained back pain, have been freaking out quite a bit in the last week at the thought of having bone mets but this thread has given me some hope if I'm dx with secondaries.

[Newyork]

3 years and two months! Been tough but doable...diagnosed mets to bone from beginning.

[sarah66]

Hi all, first diagnosis in Jan 2008 , then recurrance and mets to lung in 2012. Treated with taxol, bilateral mastectomy, last ct scan clear. fingers and toes crossed !

Sarah xx

[nicky08]

Hi ladies, and any gents reading this.
I have been living with mets since 2008, firstly in the bones and last year some spread to the liver. Up until last year I pretty much did everything I used to before the dx including lots of travel, holidays and generally enjoying life. Last year was a bit of a blip with loads of appointments, mainly to improve heart function which has been severely impaired with chemo in 2008, however feeling good now and hoping that Capecitabine will keep things at bay (or shrinking) as it has been since Feb last year.
Nicky x

[Smartie]

Hi All,
Will be 8 years for me in March since secondaries in bones were diagnosed. Now in lymphs extensively but am currently on Capecitabine and feeling pretty good.
Good luck to all.
Smartie x

[Mema23]

I hope in a way there are some primary ladies reading this thread as well, then they will know that a secondary diagnosis is not the end of the world although it feels like it on the day you find out. Hugs to you all xx

[fudgeincornwal]

Hi All

I've actually re-registered to post on here!  Well done LAM, brill idea!!!   I was dx with IBC and possible liver mets in 09.  after all the usual chemo and rads went into remission, mastectomy then recon, lipofil, nipple recon. August Scan 2011 showed growth on head of pancreas.  At present on PHEREXA trial with Herceptin, Pertuzumab and Capeciabine. Large shrinkage at begining, slowed a bit now but still good.  In all this time no symtoms, feeling well, full of energy, eating well and feeling great.  So glad there is lots of us the same. So it will be five years next month since first being diagnosed, I actually feel as though I'm coming full circle, this is going to be my year! love to all  xx

[belinda]

I was diagnosed with bone mets from the beginning ten years ago. Have felt very well for very much most of this time.

[mrsblue]

7 years 6 months with mets (double whammy, bc+bone mets).  For the last 4 years 6 months I've had liver mets too.

Not sure I would call myself "well" when I was coping with a really tough chemo, but... yes, generally I've been well for most of this time.  Currently I would call myself well - but let's see what 2014 has in store!  Whatever happens... this site is a good starting point for support.