Irene in Tampa/Tykerb

[Sandy H]

Irene have you heard anymore on the Tykerb? Last Friday my doctor told me when I he entered the room it would be 2 or 3 weeks. After we talked and he saw that my skin mets were progressing he said it would be a week and he has put rushed on all the papers. I see him again this Friday so we will see. I am going to ask him if I should contact my state Senstor (I have in the past). I think waiting two months is too long when we are progressing. No wonder people die waiting for treatments. This disease doesn't wait for paperwork to be done. Sorry if I sound negative but these people are not in our shoes and fighting for their life. Hope its moving along faster for you. hugs, Sandy

[IRENE FROM TAMPA]

Yes after several weeks of fustration, I received a call yesterday from my oncs office who said she was told that they are shipping the Tykerb. We are hoping they receive by Wed. but they were also told that last week and nothing happened.

They have a criteria you must meet on being scanned two weeks prior from start (that's an echocardiogram and a Cat Scan). My two weeks is up this Friday so the drug better arrive soon. Of course, the office has argued that point, not to have to redo these scans. I have the Xeloda in hand and ready to go soonest the Tykerb arrives.

Sandy you might want to contact Joe regarding any issues on delay. He might be able to be of some help.

Good luck to you. I will post to everyone once its received and I get started.

Maybe I will hear something today.

[Sandy H]

Irene I have already had the muga scan as my 3 months was due. He said that where cat scans show nothing for me he will use his documented notes and perhaps a photo of the skin mets as they are visable to the eye. He said it depends where the mets are as to what they want for proof of progression. We will see. Thanks for your help and I did receive an e-mail from Joe. The oncologist says there is no problem with GSK and that this has gone along very smoothly. I still think that waiting for two months for treatment should not be for us with this aggressive disease. I have seen how paperwork can tie things up. I am happy that you should be getting your drug this week and pray that it works. hugs, Sandy

[karenann]

Sending hugs and prayers to both of you.

Karen