Celebrate

I really appreciate the camaraderie and support which comes through using this forum, thank you.  I wanted to start a new thread inviting you all to post one thing, how long you’ve been well since your secondary diagnosis.  Lots of us do this in other threads as part of fuller answers but I would like to check in with sometimes to remind myself when I’m worried, just how many of us are continuing to live with Metastatic Breast Cancer.  I would find it really inspiring and encouraging! SO here goes,

 

 

2 years 2 months and well since diagnosis with bone, lung and liver mets!

Well done Lam, A good idea. I’m similar to you. 2 years 4 months with secondary BC. Mets to skin and lungs, Oct 2011, bones and liver more recently but feeling well! Sheila.

7 years 4 months since mets dx. Now in bones and skin with lots of lymph node involvement, but still here and still smiling!!!

P.S. Brilliant idea!

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.

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

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

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

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

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.

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?

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

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

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

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

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

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

 

 

 

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 .

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

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

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