Hello to all you Ladies on this board,
I have been trying to access this board all week with any luck so at last here i go!!
Let me start by saying i have been a reader on this forum for a longtime and feel like i know you all,
Let me tell you my story so far went to GP November 05 with a lump to be told it was hormonal and nothing to worry!! cutting the story short diagnosed May 06 Stage 4 mets to the Liver straight from the onset. so no mastectomy straight to Chemo, did 6 rounds A/C the breast lump dissapeared but the Liver progressed, so went straight onto Taxotere, what a nightmare i was awful side effect were horrendous for me, mouth ulcers admitted to hospital for 7 days low blood counts. after 3 month scan it hadn’t touched the liver, by this time I’m really depressed, so i move to Xelodia and Herceptin as i am ER/PR Neg HER 2 - Pos and hallelujah it started shrinking, had another 3 month scan and after 6 cycles still shrinking, so as off last May been on Herceptin only.
Went for a scan in Jan and there’s slight progression i was gutted now my onc said he has a clinical trial about to open on the 1st March and wants me to try it he doesn’t know much about it at the minute all he could tell me was its the Embrace study E7389 Esai. or i can go back onto Xelodia which i got good results on.
After reading through the conversations you have on here i asked my onc about RFA and he said it wouldn’t be an option (i have two spots) to the liver.
i feel absolutely fine and always have full of energy, a thick head of hair again, have not stopped working so i was gutted when he said the words slight progression.
Well that’s my story so far and hope I’m welcome to join in the discussions with you all.
I am getting my treatment at Leicester Royal Infirmary. would love to know if anyone has heard of this new trial its a phase lll.
Hello and welcome to the forums. I’m sorry to hear of your recent secondary diagnosis, I’m sure you will receive support and help from the other forum members very soon.
In addition, you are welcome to join our secondary live chat session on a Tuesday evening, it is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information and it also gives the chance to talk to others in a similar situation. This session runs from 8.30-9.30pm.
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Just wanted to reply to your post and let you know you are not alone. Not sure if you have read the “Anyone out there with liver secondaries”, we are a great group of people and keep each other going, so join in at your own peril. But seriously, we help each other out.
I have just been to see a liver specialist about RFA or resection, but found out I have a few more tumours on my liver than I thought and surgery is not an option. Think I am er/pr negative and am def HER2 pos, as now on herceptin. I had 3 x FEC ad 3 x Taxotere, ended up in hospital after 2nd tax, but got through it all. Was told in December that I had “considerable shrinkage” whatever that is.
I am 39 yrs old with a 1 yr old boy and 4 year old daughter, so don’t work, although I reckon being at home 24/7 with them two is a full time job in itself!!!
Anywy, I am rambling. Please do join the other thread and hopefully can join in our meetings. We have only met once the other week, but are planning on more.
Have just posted on the “anyone else” thread but did want to post on this one as well. I hadn’t heard of this trial I’m afraid and it must be a difficult decision to make when the Xeloda worked well for you the first time around. I did google it - should be Eisai not Esai - which came up with some information but mainly American trials.
Presumably it is a case of the trial now or not at all?? If you went for the trial, could you then opt out quickly if the drug didn’t work for you - how often would they scan you etc?
Cancer Research UK also have a general bit about trial phases - think I can post the link cancerhelp.org.uk/help/default.asp?page=73#phase3. My understanding is that because this is a phase 3 trial, this would therefore be a drug that has been shown to work - they just don’t know whether it works better than other treatments available.
I’d be really interested in knowing what more your onc tells you about it and what you decide. Presumably you have to make a decision quite quickly.
Love Kay xx
hi Tracy Sorry you had to join us but… I’m her2+ with liver secs [my long story is on liver sacondaries next to last page] Ive been on herceptin since before i knew I had secs but unfortunately it didn’t do it for me-- so I am on a trial OMNITARG at CHRISTIE M/C phase II .I have it with herceptin three weekly and it is working! size of 2 tumours down 30% and holding this trial seems to be successful but their are only 66 of us world wide so I don’t know anyone else… they are applying to open another trial with more patients but it takes time look out for it as a future route / side effects are minimal tiredness is the biggest but no nasties. xJan
Hi Tracy zi am in Leicester with liver mets X best wishes Debs x
Just to let you know that you have replied to a very old thread April 2008 …it’s probable that Tracey won’t be reading it after so long !!
She’s probably bungee jumping somewhere!!
Thanks - how do I get onto Liver Mets and find Leicester ladies? Best wishes D x
Hiya debs .if u look further down the thread list there is a couple of newer threads where u will probably find more active postings.
Hope u will find someone locally …I’m no help …I’m in Devon !!!