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Xeloda working on my IBC & brain mets!

16 REPLIES 16
MarcieM
Member

Re: Xeloda working on my IBC & brain mets!

It is great news!!! Congrats. I am sure your positive thinking also help.

debsincornwall
Member

Re: Xeloda working on my IBC & brain mets!

Lynn
it so good for us all when we can share good news. I know it certainly helps me. Congratulations.

Love Debsxxx

lynnferg
Member

Re: Xeloda working on my IBC & brain mets!

Thank you everyone for all your comments. Mostly I wanted you all to know that, despite an initially bleak outlook (my husband has let me see some of the e-mails he sent when I was diagnosed with the brain mets, and it's clear that I was only expected to survive days or weeks) things can work out surprisingly well.
Love, Lynn

Kiwigirl
Member

Re: Xeloda working on my IBC & brain mets!

So good to read this. Am only jst starting out on xeloda, so it goot to read positive reports.

kiwi

mrsblue
Member

Re: Xeloda working on my IBC & brain mets!

Oh Lynn, that is SO encouraging... these new treatments are amazing when they work as intended!

Belinda48
Member

Re: Xeloda working on my IBC & brain mets!

Lynn

So glad to hear your news definitely worth celebrating.

Best wishes Beli x

GrannyScouse
Member

Re: Xeloda working on my IBC & brain mets!

Lynn, what wonderful news for you. It's great to hear of good things happening to people. As others have said, long may it continue for you.

Good luck to us all.
Maureen xx

ForumMember
Member

Re: Xeloda working on my IBC & brain mets!

It's lovely to hear your news Lynn - just goes to show it isn't all doom and gloom!! It's about being realistic and having hope!

xxx

dippykate
Member

Re: Xeloda working on my IBC & brain mets!

really pleased for you. Long may it continue for you

dipstick
Member

Re: Xeloda working on my IBC & brain mets!

Lynn

brilliant news, great to hear and long may it last.

best wishes to all
Chris x

Jennywren
Member

Re: Xeloda working on my IBC & brain mets!

Fantastic news Lynn. I'm really glad to hear you are doing so well!

Jenny
x

Kay123
Member

Re: Xeloda working on my IBC & brain mets!

Fantastic news, Lynn. I had similar scan results (liver mets) last month after 6 cycles of xeloda - it clearly works extremely well for some of us!

Long may it last.

Kay x

bikinggirl
Member

Re: Xeloda working on my IBC & brain mets!

What fantastic new,
thank you for sharing that.
Well done and congratulations...

It is so great to hear these stories.

tish79
Member

Re: Xeloda working on my IBC & brain mets!

Fantastic news Lynn, so so pleased for you!! Do some celebrating girl 🙂

Tish xx

KatherineM
Member

Re: Xeloda working on my IBC & brain mets!

Lynne, thrilled for you- thats great and it must be a wonderful thing to say goodbye to steroids on top of such great news.

cathyx

dawnhc
Member

Re: Xeloda working on my IBC & brain mets!

Hi Lynn

It all goes to show that with breast cancer that one-size definitely doesnt fit all! That is such good news for you and I hope it stays that way for a long time to come.

Dawn
xxx

lynnferg
Member

Xeloda working on my IBC & brain mets!

I saw my onc last week, and the results were about as good as they could possibly be.
A physical examination revealed that the Inflammatory Breast Cancer lumps (local recurrence) have gone. A neck, abdomen, thorax & pelvis CT scan showed no new problems. My MUGA scan (needed for herceptin) showed that my heart performance has actually improved slightly. But, best of all, the 3 brain mets have shrunk so much that the onc thinks that, looking at the brain CT, it could just be scar tissue remaining. They have improved so much since the last scan that he is sure the Xeloda is making the difference (it's not just the continuing effects of February's Whole Brain Radiation). Because of this, I have been able to reduce my 1mg of steroids (dexamethasone) a day to 0.5mg, and if that's going OK after 10 days, I can stop completely. After 10 months on steroids, I can't wait!
No one can say that I'm cured and the mets won't come back, but right now I'm feeling fitter than at any time since the brain mets appeared at the beginning of the year, when the outlook was very bleak indeed. I'm on my 5th cycle of Xeloda (capecitebine) and the side effects so far are quite easy to cope with. Things are definitely getting better, and I feel like I've got my future back.
So don't give up hope. Even a diagnosis of '3 inoperable brain mets, and it's terminal' isn't always as bad as it sounds.
Lots of love,
Lynn