hi lindagro, i hope you get the tykerb ! let me know how you get on . i do know some people on here have had it in conjunction with another drug (chemo) it will be good to hear how you get on with it on its own. can i ask you your history with regards to breast cancer ? if this is to personal i understand .i love to hear good news n here and i am sure yours will be too.
sophie xx good luck
hello Sophie, saw the research nurse yesterday she explained all about the trial programme and I had to give permission for the tumour they removed to be tested to see if it is positive for HER2. If it is then I can go on the trial.They are trialling it on ladies who weren’t tested for HER2 ( before Herceptin was available). She said Tykerb is quite similar to Herceptin, but in tablet form.
I was diagnosed in Aug 2002, had lumpectomy, then mastectomy and 6 FEC chemo, Tamoxifen for 5yrs, now about to start Aromatase for 5 yrs. I had a tramflap reconstruction in Apr 2004,lift and reduction on good side and have not long had nipple made and tattooed. I’m really pleased with results.
Will keep in touch as I hear more.
Linda
hi linda , have i was also diagnosed in 2002 had lumpectomy, then mastectomy had tango trial with 3 arms really bad ! then had rads, reconstruction back flap ( great finish ). On tamoxifen , then arimidex as started periods again on tamoxifen, then cancer came back in spine 2005 then over a period of 1 year spread to 4 other areas within the spine ! had herceptin for the last 2 years, which has slowed it down. i am still on herceptin , also bone strengthener and now on folsaldex since September 2007, had scans in oct which showed cancer has stopped growing whop e ! now due more scans on the 14 jan 2008 which i am really worried about .
Have you started tykerb yet ? i wondered how you were feeling if you had .
sophie
Hi Linda
I’m also on a trial taking tykerb, been taking it for 13 weeks now. It’s similar to hercepin but I was told it is better as is a smaller molecule and is able to penetrate the cancer cell and attack it from the inside, while herceptin only attacks from the outside. It can also penetrate the brain which herceptin can’t. I had a terrible skin rash and diarrhea when first started and they ahd to interrupt it for a week and subsequently reduce the dose as the diarrhea kept recurring. I still get it occasionally but not as bad. Its not fun, but it has reduced my tumour b 2/3 which is fantastic! Good luck with it!! I
Hi webmum, i have been following tykerb for the last year or more, as i am on herceptin. at one stage the i had bone cancer in only 1 part of my spine however it has moved to various of other sites within the spine, whilst on herceptin and other hormonal tables , they kept changing the hormonal table from tamoxifen, arimidex and so on but 6 months ago they started fosaldex (Needle in bum ) after the scans in oct 2007 cancer hadnt progressed , so i am due scans on 14 Jan 08 which i am hoping the same . i before i was given fosaldex i was trying to get on a trial with tykerb as i have read so many good results, however was knocked back as it has spread to any other part of the body. hence why i am watching it ,i do hope they licence it soon as so many people can benifit from this . sorry for rambling on i am so pleased it is doing the trick for you , keep me informed of you progress.
sophie xx