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,
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
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.
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
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
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
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.
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?
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.
Take care 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
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.