Hi Ladies,
I am 41 year old and was diagnosed with Breast Cancer in May 06 staright off with Liver Secondaries, no history of B/C in family i started A/C chemo which shrunk thr breast tumor completley but not the Liver x2 spots.
I then started Taxotere that was a nightmare after 3 lots this was not working so i started Xelodia and Heceptin this was my lifeline a very easy chemo and shrunk the tumors so after 6 lots onc took me off Xelodia and stayed on Herceptin only that was last May, i then went on to have two good scans and in Jan of this year i had progression .
So i was given the option of a trial due to start at the end of Feb, which meant being off chemo for 5 weeks prior to starting the trial, when it came to starting the trial i did not meet the criteria as i had been off chemo 9 month and the criteria was 6 month.
so as of today im still not starting chemo until next Tuesday it seems absolutley endless to my starting as when you know you have progression you just want to do something, my onc said my Liver tests last week were slightly out but nothing to worry about.
I am due to start Gemzar/Cisplatin next week i really enjoyed my chemo free time nearly a yera it was great and i was so dissapointed that the Herceptin faied so quick and im finding it really difficult to lift myself.
Dont get me wrong im very active with two kids who i adore dearly and still work but god the emotional rollercoaster of thios drives me mad!!! im usually so upbeat and positive and i think thats why im so frustrated i cant seem to snap out of this mood.
I have been following all the posts on the boards and have posted before on the Liver secondaries forum and would love to meet others in my situation but im in Leicester and there never seems to be anything this end.
Love to all
Tracey. x
Tracey i know where you are coming from , i have liver mets also , would you be able to come down to london on april the 24th to meet us ?xx
Hi Tracey
It sounds if you are having a difficult time and wondered whether you knew of a some of the other support services from Breast Cancer Care for secondary breast cancer.
There is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link breastcancercare.org.uk/content.php?page_id=11306
There is also a secondary live, this Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts, again for more information click the link breastcancercare.org.uk/content.php?page_id=6218
I hope this is of some help
Kind regards
Katie
Hi Tracey
I remember you posting before when you were thinking (if I remember right) about whether to go for the trial or not. Sorry that the trial hasn’t worked out for you and that you are finding it hard at the moment. If you are like me, telling yourself to “snap out” of a mood, doesn’t work at all - in fact it just adds to the frustrations! And the waiting for treatment to start must have been really difficult - hopefully you will feel better emotionally when you start the chemo, even if physically you feel worse!
As Tracy says, we are having another “liver birds” get together in London (near St Pauls) - you are more than welcome if you felt able to make the trip down. I found it such a boost when we met (5 of us) in January. Failing that, all I can suggest is that you start a new thread to see whether there are more ladies in the Leicester area who would like to meet up - I am sure there are but it is just a matter of reaching them. There seems to be a sudden interest in various meets around the country and all seem to have had a fair response.
Keep in touch - and let us know how the chemo goes.
Kay x
Hi Tracey, not sure if I’ve read your post correctly but wondered if you could go back on Xeloda if it worked so well? A couple of friends who post here and have liver mets have been on Xeloda (tablets) for ages and ages…years in fact with breaks in between when the side effects get too much.
Hope you’re able to meet up with some of us…it’s helped me so much to meet others in the same boat. Belinda…xx
Exactly what I was thinking Belinda. I too wondered if you could go back on Xeloda. Usually if a treatment was still working you can go back to it. Funnyface
Hi all
Thanks for the replies, feeling a little bit better tody it dosent help that i am full of flu and feeling really crap ive not had a cold for about years way befor starting this chemo journey, i think it proves im a bit run down.
Kay - yes it was me that was going to start the Esai Trial but as i had had such a good response from the Xelodia i was not eligible so that put me back again starting chemo, i do think ill feel better mentally when i get started now.
Tracy i would love to come to the meet in London money pending its my sons st on the April and my daughters 16th on the 22nd April as you can imagine its an expensive month, but i will see what i can do.
On another note i got a lovely two days off now as we are on strike(department for work/pensions) but it looks like im going to be surrounded by Paracetomol and Olbas Oil.
love to all.
Tracey. x
Hi Tracy glad your feeling better so many ups and downs !
I’m the same as you liver mets as soon as I had breathing space sorry you didn’t get on to your trial I was lucky and got onto one that is currently working for me around this time last year it was touch and go as I had to wait six weeks for a worse CT scan before I could start had my last CT last week results after Easter fingers crossed and all that xxJan
Hi Jan
What trial are you on, im glad its working for you why is the wait so long to start these trials i had my scan in January which showed progression, then had to be off Herceptin 5 wks then to be yold not eligible and that was last wk so here i am ready to start next Tuesday.
It plays with your mind thinking it cant be doing me any good being off chemo, but the onc was not concerned, i wish now i had opted to go back on chemo in January rather than wait for the trial.
Good luck with your scan results!!
Let me know how you get on
Love Tracey. x