Can anyone help Carol Please??

[tricia keegan]

Hello all,

I met Carol H from Dundee Scotland here over a year ago when Chrissy sent me a pm to say this lady was looking for help to move to Ireland in the hope of getting Tykerb which was not available to her in Scotland. Happily I was able to help a little and Carol is now living here with her hubby and two young children, she's had a rough year as her bone mets spread to brain and surgery could only remove some of it.
She then had WBR and has been struggling and fighting this disease all year.
I received this e mail from her last night, and am pasting it here with her permission as she desperatly needs help.
For anyone who does'nt remember Carol she posted her story on profile's in courage entitled "Wishing to live to age 40" .......
Carol does'nt have access to the internet right now so on her behalf I'm echoing her plea and asking for help or advice and would like to also thank you in advance.I think Carol can explain her situation better than I in her mail below.


Can't sleep and thought I would drop you a line in the hope you can maybr hrlp = got a phone call today from my breast care liaison nurse who confirmed the brain scan results from last week.
The Tumour has started growing again - which I rxpected as my symptoms are getting worse - dizziness, falling over, cannot hear very well out my left ear and generally feeling weird - the bone pain is just as bad but didn't get the ribs or spine treated whilst I was in Stv Lukes as I was there purely to treat my left leg - its still quite sore all the time even with taking morphine tabs every 4 hrs and slow release tabs as well but maybe it takes a few weeks to kick but I am seeing the consultant at St lukes soon so he can discuss it with me - he has offered to give me more Radiotherapy in the brain to try and shrink and delay the tumour growing for a couple of months - I don't know whats going to happen next really in no mans land at the moment.
I was told I am not eligible for the trial on Tykerb as my mets are unmeasurable in the bones and brain - apparently I don't meet all the criteria - but Prof Crown said not to panic = from Jan 08 Tykerb is to be Licenced and available and he will wangle it that I receive Tykerb along with Capecitabine chemo tablets and start asap in January but am scared being left over Xmas and maybe need Radiotherapy in brain asap just to slow down the brain mets over Xmas period as feeling left untreated for more than 4 wks will mean by the time I start on new treatments it will be too late and the cancer will be way too advanced and untreatable.
Got so much to think about and have tried to re register with HER2 website and asked them email me with new mem password etc bu received nothing yet - can you do me a note on the message/main board asking for any tips advice anything at all about brain mets returning and will I start to deteriorate really quickly - will I still be alive in a couple pf months = am I just worrying too much - sorry = this insomnia is worsened with increasing my steroids to control the brain mets symptoms.
Welll I will call you during this week for a chat - are you in during the day or at work would evenings be better to call.
Thanks again for listening to my rants and raves.