Well here I am and gutted. I was initally diagnosed on 5th June 07 and after surgery, reconstruction, chemo, radio and hercptin I really thought life was beginning to get better.
It was not to be. A routine CT scan picked up a spot on my spine. I am 38 with two amazing boys - 12 and 9. If I didn’t havet hme I think I could not have coped or have the fight.
I am on Xeloda and Bonderat (not sure of spelling). Feeling OK but nevertheless feel my life is over. What can I say.
Looking for support and what I can do to stay well.
Thanks in anticipation
PS used to be Muddy but long story - new email etc,
I’m not going to deny that this is damneed dreadful, because it is, and the feeling when one is diagnosed with secondary’s must be one of the very worst.
I’m not going to give you all sorts of false hope, because as you know this is serious country, but I also have to say there are quite a few women here you have gone on for many years with this. I am now two years past diagnoses, and I am looking to have very many more.
I had to have a spine operation, but at the moment I am feeling pretty well. and I think it is a given that it is usually worse if it has hit an organ rather than the bones.
If you are HER2 positive you can also have herceptin - which is currently my life saver.
Take care, and do feel you can come on here at any time for support, because there is usually some insomniac around!
Really sorry that you have had to join us on the secondary site but hope that you will find lots of support, information and help here - I certainly have. Like you I had a period of time between primary and secondary dx (nearly 5 years in my case) and recognise that feeling of despair when despite trying to get life back on track,you realise it is not to be.
People cope in many different ways and some do well and some sadly don’t do well at all. It is nearly 2 years since my secondary dx, and it has been a real rollercoaster of emotions - times when I have been very down and really thought I would die fairly soon, and other times when I have felt almost too happy when things have gone well. And certainly in the last 2 years I have done many things which have helped me feel my life isn’t over yet (though am absolutely aware that it will be much much shorter than I would want).
I too am on xeloda and have been since May last year. It has worked very well for me - I had multiple clusters of tumours in my liver before starting on it but have been NED since September. I’m now on a low dose (just 1000mg x2) and am hoping that it is continuing to hold everything under control.
How long have you been on xeloda for? And have you any indication yet whether it is working for you? I have found that over time you do, to some extent at least, adjust and find a sense of “new normal” which includes drugs and hospital visits and scans - and uncertainty.
Hope some of this is helpful. Let us know how you are getting on.
I am sorry to read of your recent diagnosis. As well as the support you receive form the other users you might find it useful to have a copy of the secondary resources pack, which you can find by going to:-
If you feel you want to talk with someone please don’t hesitate to give the BCC helpline a call where you can speak with one of our trained memebers of staff. The number to call is 0808 800 6000 and the lines are open 9am to 5pm Monday to Friday and 10am to 2pm Saturday.
Muddy it is a hard place to be when you are young with a young family. But don’t write off the rest of your life yet. Many go on to lead pretty normal lives with a dx of bone mets. I have had breast cancer now for 19 years and since 2002 have had extensive bone mets. Mine have been well controlled with pamidronate (another of the bisphosphonates) and herceptin. It is only this past year I have been a bit more restricted, no further spread, just a few areas playing up. I do hope yours has been caught early on and the treatment stops it in its tracks.
Thank you for yuor prompt replies - I don’t know yet if the Xeloda is helping keep it under control.
I am on my 2nd cycle. The first was awful - really sick but this one I have been taking Ondanstetron along with Metoclopromide and have managed really well.
I made a decision not to tell the boys I was sick again as I want them to have as normal a life for as long as posssible - plus I dont know what to say - will i die - yes when don’t know. Felt it best to try and hold it all together until I can at least see if the drug is working.
I am going to continue with Herceptin and have had my 18th dose which should have been my last one.
My husband has been amazing. I was due to consider returning to my part time job which I loved but now feel that would be silly. Want to take care of me - rest when i can and be as good a wife and mum as posssible. Life is a funny old thing. I really hope I have a few years left in me yet. The oncologist felt he had caught it really early and a further bone scan showed up nothing,
Have had radio on it and no pain. I think that’s what scares me all my aches and pains which were invesstigated turned into nothing and the silent one was the baddie! Thanks for your support - I’m going to need all the help I can get.
MuddyXX
Hi Muddy
I know how scared and worried you must be as I was in your position this time last year. I have bone mets and am now on Arimidex and pamidronate. I had chemo last year and I now feel I can get on with my life once that part was behind me. I’m not fooling myself into believing there’s no more problems down the road but I try to live for the moment and enjoy myself as much as possible. I have had great inspiration and support from the ladies on here and, as I’m now one of them, we can offer some good advice and help when you need it. It will take a while to get over the shock and I hope the Xeloda works well for you. I had to tell my 2 teenage daughters what was going on as they were too old not to but as your children are younger I do think you’ve done the right thing as they wouldn’t understand everything at this stage.
Look after yourself and ask any questions you want to on here - there’s bound to be one of us who can help.
Take care
Nicky x
Hi Muddy, sorry to hear of your secondary diagnosis. I remember what a shock it was for me when I too was diagnosed by a routine CT scan in Feb last year in both lungs and lymphatic system You’re thinking you’re fine and to be told it’s not is a big shock. You’ll get wonderful support on here. It is now just over a year since my secondary diagnosis and my last 2 scans have been completely clear after 9 months of taxol chemo and Avastin last year.
I, too thought my life was over but have got used to developing a new sort of life for myself and learning to live positively without thinking too far ahead!We all cope differently but for me, as much"normality" as possible helped me in an abnormal situation.
Thinking of you,
Anne