Think I’ve spoken to you before? we seem in a very similar situation… RFA at the C & W under the care of DR Mc COLE? think we both have a young child (i have a daughter who is 9) I have recently been told my liver mets have slightly increased - the one that was ablaited has remained dead. and I’m due to start xoleda in a few weeks. Would love to stay intouch and compare notes on our next hurdle…I know that BCC wont allow us to exchange email address, do you ever go on the live chat? I always forget!! let me know if you think there can be a way aroound keeping in contact.
hope all is good your end Love Ambrer xxx
Dear Amber,
I remember reading your reply and thinking how similar we were - it would be great to keep in contact and ‘compare notes’. My daughter is 7 in a few weeks.
The RFA was great and Dr McCall was so nice…hopefully if they can get me stable again I will be able to see him again. I have just changed from Tamoxifen to Femara to see if it works but if not they have suggested Taxotere which I find really scary…Xeloda sounds a lot better on both side effects and just being able to take a tablet at home !!!
Don’t do live chat for 2 reasons a) not very good on the computer and not too sure what to do and b) normally in bed by that time !!!
I wonder if the private message thingy would work ? Or I think I read if you pass your details onto the moderator she would pass them on but not sure ?
Half term this week…joy !!!
Keep well,
Love Jetty x
Oh Hi Jetty
Great to hear from you, Tamoxifen only worked for 9 moths for me but I’ve had a good run on famara - and so many less side effects for me, I have been on it for well over 2 years . Before I had RFA I had taxole which was very kind to me and with help along with the cold cap I held on to every strand of my hair, no sickness or anything - a very easy chemo to tolorate, I know others have had a more difficult time with it, but life for me was pretty much normal.
I’m about to start Xoleda next week, I have heard that can work for a long time - but the thought of being on chemo longer than the usual 4 months is daunting? I’m under the care of prof Smith @ The Royal Marsden and he is hoping that the Xoleda will mop up the micro scopic cells then he will Ref me back to Dr McCole (very lovely kind man) to rid of the few other tumours that have grown to around 1cm to keep on top of things. I’m going to try and have a holiday before my next hurdle! My Daughter is 9.
Modorator if you are reading I hearby give permission to give Jetty my details??!
All the best Jetty, I’m sure you will get good results from the famara. So try not to worry about what could be a long way off - but remember that chemo is no where near as bad as you can imagin.
I hope the modorators will allow us to exchange emails if not private message me as I dont really visit th BCC forums that much anymore.
Have a busy 1/2 term!
Love Amber x
Dear Amber,
Thanks for the info re Femara and chemo…made me feel better…just like to ‘feel’ as if I am in control of this disease rather than the other way around (but I know who is the boss really). Just feel well at the moment and don’t want to knock myself out just yet !!
I am under Dr Johnston at the Marsden :0) Wonder if we have ever sat next to each other ???
Moderator I too give permission to give Amber my details…
Will have a go at sending a private message later/tomorrow - wonder where it will end up lol !!
Love
Jetty x
Sorry for invading this thread - but please keep us posted as to whether details are exchanged
Good Luck with the treatments!
Anne xx
Dear Anne,
Will let you know what happens re being able to exchange e-mail address and your not invading the thread at all…had a quick go at trying to send a private message but nothing happened !!!
Jetty x
Hi girls
Nothing recieved as yet?!!
Yes Jetty, I wonder, although I think Prof Smith clinic is on a weds, not sure what day Steves is on, I will also be resuming herceptin as from next week so will be spending more time back at the hospital. I do hope we can get some way of personal contact, I have lots to tell you!! I have spoken to one of Steves Senior reg’s while Prof Smith was off sick - her name is Anastaisia?? - do you see Steve at the Sutton or Fulham branch? I’m at Fulham.
I will try and send you a private message
I also wanted to say try not to spend your well time worrying about your unwell time…chemo could be a while away for you…do you know why they have no RFA again? have you ever had any chemo?I was Dx 4 years ago with 2ndrys at primary (like you I think) only just recently I’ve had a few aches and pains - I am very active…Ski, went roller skating for my 36th birthday back in december and usually spend a month in India every year doing yoga - with my daughter! I would be there now if I didn’t need chemo at the moment . Chemo is a very scary word and this will be my 3rd lot, I had FEC the 1st time and that was pretty bad, but no where near as bad as I thought it would be.
Love Amber x
Dear Lucy (BCC Facilitator)
Thank you very much. Have done what you advised and think it may have worked !!
Jetty
Thankyou have quickley jotted it down B4 it gets removed !!- Amber xxx