Hello
Just got my ct results, and got bad news, am really feelin very numb and not quite sure how to react! if that makes sense, cant seem to cry much or anythin.
have had secondaries in my lungs and spine since nov 07, and just a routine scan last week to check things, iv been feelin exhausted and had lot of stress lately from my step daughters and home life, and think that probably hasn helped.
anwyay i now have 3 tumours in my liver and one more in lower spine. they have changed me to exemstane and there is talk of chemo. problem i have is convincin the onc for me to have the right treatment as booked my wedding for july and she kept sayin oh we have to have you well for your wedding, so may not give you chemo!!!
anywya see what happens i gues, waitng for a bone scan to assess spine tumour. meanwhil on exestmane.
gutted everythin was goin so well. why me?
xx
Hi Zippy,
so sorry to hear your scan results, you will be in shock. As you know I have had secs for 5 years this May. I had done various chemos have you done xeloda it is tablet form so you don’t lose your hair and for me it was the kindest chemo. I did exemestane but for me it was like compost and my liver tumours thrived on it. I know we are all different so please I am only telling you about my reactions yours will be different
If you were able to start xeloda now you could be feeling a fair bit better by your wedding in July.
Congratulations on that, we got married in the June after my diagnoses and never believed we would be celebrating 5 months let alone 5 years as we will this year.
Love Debsxxx
Hi Zippy, I’ve just sent you a pm, Debs mentions Xeloda and I’ve mentioned it too in my pm. Exemestane, Aromasin, wasn’t great for me BUT I know others who have taken it for ages.
I feel really well on Xeloda so it maybe your onc might consider it for you…and you keep your hair on Xeloda. Are you having any bisphosphonates for your bone mets?..if you click on my name and read my profile you’ll see I was in bad shape in 2003…things can get better again over time…hang in there…Belinda…x
Hi Zippy
I am so sorry to hear of your scan results. It’s so horrible to hear those dreaded words and and I think numb is a totally normal and understandable response. The timing is awful for you, too.
So have you got a treatment plan yet? Sorry, I don’t know what exestmane is. Is your onc thinking of holding off the chemo until after your wedding to see how it goes & re-stage? If so, I can totally understand your anxiety. I am also on Xeloda and, as Debs and Belinda have said, it is a much kinder chemo and would seem a sensible choice to be able to get you to the wedding but without major side effects.
For me the very concept of liver mets was (and still is) frightening, but I must say how reassuring it was at the last London meet to see women who’ve been leading fairly normal lives for years with their liver mets - and even NED! You will probably know that Debs has been through the wringer with her mets and apparently her liver looks like Swiss cheese (sorry to out you, Debs)- my liver doesn’t look so cheesy but the widespread mets have shrunk dramatically from 7cm to 1cm - something I never dreamed of when I was dx a year ago.
I know it will take a while before you get your head around this, but I would suggest that if you’re not happy with your onc’s plan you could always get a second opinion. In the meantime I’ll be keeping my fingers crossed for your bone scan. And as Belinda says, hang on in there!
xxx
hi debs, belinda and ripley
just a quick email as at work (should be working!!) got lots to do.
thank you for your kind words, they really helped, dippykate also inspires me a lot too, not sure how she is at the mo, but i think of her a lot. so between you all i know i can do this and get well again!!
am back at work today as normal and having to comfort all my colleagues and friends! as i dont cry but htey do it for me!!! so havin to give lots of hugs rather than receive them!! its funny!!
anwyay thank you for being there for me and thanks too belinda for your message.
Rachel 
xx