tykerb/lapatinib

lindaw · 10-06-2006, 03:58 PM

Hi
I have finished radiation and the chest is clearing up well. of course as i said before the skin mets have moved to my shoulder - but it is a rash only at this point not open like on my chest.
I am going to see Onc on Monday to see whats happening in the Tykerb/lapatinib journey,It has to go before the ethics commttee of the hospital as a first step. i am hoping the new mets will make them hurry but i know this is a slow process. i am so anxious to try it and see if it works on these ongoing skin mets.

love
Lindaw

Lolly · 10-06-2006, 08:20 PM

Linda, how wonderful to hear your rads program is putting the skids to the nasties on your chest...I DO think the Tykerb is worth pursuing, as you've probably read SandyH's posts about how it's working so well on hers. Will keep you in the prayer chain, and hope the hospital "gets a move on" to push your application through. You are an inspiration, Aussie Girl!
<3 Lolly

chrislmelb · 10-07-2006, 08:12 PM

i am sure you are in Australia? The Royal Melb Hospital is about to start a trial on Tykerb so it should be up and going soon. I wonder if that EAP program reaches over here?
Good luck
Christine

lindaw · 10-08-2006, 07:55 PM

Dear lolly and christine

Thanks for your support. Christine the EAP program is in Australia - or the beginnings of it. I have just seen my oncologist and the ethics committe stits next week and then he seems to think it should be available. ( I am a little dubious as it seems to take ages to get through - but heres hopiing).
it should be available wherrever the trials have been for Xeloda/lapatinib.

I am hoping it will be available as the skin mets are purpley and he says I have a node in my neck now - have to have more scans next Monday.

love
linda

Sandy H · 10-08-2006, 08:08 PM

Linda: I would say go for it. It has done wonders for me!! It is so easy to tolerate at least for me. The Xeloda is my worst enemy here but I am on a real low dose and am still having a few problems with diarrhea and mouth sores. Once I get it figured out what to eat and when then I will be o.k. I love it that I have lost some weight. The Herceptin just kept it on and I never realized how much fluid I was carrying around and yet my hands and feet never showed it. Everyone has commented how much better I look! I feel so much lighter. Wishing you well and keep us posted. hugs, Sandy

lindaw · 10-08-2006, 10:20 PM

Thanks sandy

I am so happy it is working for you . I know how it is chasing these skin mets.They never seem to go away for long. i am really anxious to get it and wish I could have it today - but cancer makes us practised at being patient - not good at it- just heaps of practice. i am just a little worried cause i now have this neck node.

love
linda