Long time no speak!!
Sorry in a rush as usual but will catch up with you later - a quick question for you...... how do they know that it was the xoleda that failed and not ther herceptin? I've read this message very quickly so sory if you have already explained that!
Have I got it right that Steve said you are to WELL to try xoleda/lapitinab ? or is it a slip of the keyboard?? (havppens to meeall of the time!!) - I hope he means you are too well
Its lovely to hear from you anyway
Catch you later
your old friend
Amber xxxxx !!
Amber - I was on xeloda/herceptin from march 07 to oct07. Then it stopped working for me and I became very poorly, very quickly and became oxygen dependent. I went to see Steve Johnson at the Marsden, Surrey Nov 07. I think you go there? He then said as I was so poorly and the xeloda had failed I would not be suitable at that time for the lapatinab/xeloda trial as the lapatinab would not be strong enough to work on its own. He did say in the future when I run out of other options (which I'm very close to doing now) then they may reconsider it depending on whether it has been licenced and approved by NICE. In november, he would not tell me when it is going to be licenced. Firstly, I was told it was July 07 and then nov 07 but in nov he would not be drawn into giving me any clues when it would be licenced.
This made me very cross as when I had seen him in May, he said I was too well for xeloda/lapatinab!!
After all that waffle, I guess what I am saying is do ask if you would be considered if you have xeloda now and see if they would give you any other chemo first with the herceptin
I was wondering if there was anyone out there that has had xoleda & herceptin then gone on to have xoleda & lapitinib.
I'm due to start herceptin/xoleda this week, but it suddenly sprung to mind that while herceptin was still working for me, should I maybe ask to start another chemo as xoleda is the only chemo I've heard used in combi with lapitinib and I dont want to use this option up - has anyone else come across this situation? I'm sure if/when xoleda/herceptin fails I will not be able to use the xoleda again.
Any thoughts would be great.