waiting is hard

lindaw · 10-13-2006, 06:55 PM

Dear All

Having done my 5 weeks radiation for skin mets I am now seeing new little ones appearing and some just never went away. Ny big patch of open ones is mostly closed with just a stubborn patch that I'm not sure what is doing.
Waiting for next week. I have to have scans again on Monday and Wednesday and then the ethics comm meets next week to approve the lapatanib. I'm so anxious to start and try it especially now as I have a node in my neck as well, I am finding it hard to know the drug is there and know how long it took for you guys to get it. My Onc seems to think we can get it quick after ethics approval cause we were a trial site. I am more sus. Think I will ask him to hurry when I ring for scan results.For some reason feeling teary and down.

love
linda

Sandy H · 10-13-2006, 07:39 PM

Will pray it comes soon. It may if you are already a trial site. They should have the protocals done and in place. That is what takes so long. Hang in there I know its hard the waiting is almost a killer in itself. hugs, Sandy

Lolly · 10-13-2006, 07:51 PM

Linda, you're in my prayers. I know how you feel, but try to just go one day at a time. I've been told by my rads team(for lymph node progression)that the radiation continues to kill the cancer cells for several months after finishing, so even though it's discouraging to see new sites on the skin, the rads should keep the cancer contained to the same area while you wait for Tykerb. Try to stay busy doing fun things this weekend, then scans will be done and the waiting will be almost over.

<3 Lolly

lindaw · 10-14-2006, 03:51 PM

Dear Sandy and Lolly

Thanks for your words of encouragement. I get scanned tomorrow and then will pop in to my Onc and leave a note to ask him to see if he can start quickly after the ethics committee approves it.

Thanks again
love
Linda

Vanessa · 10-14-2006, 04:17 PM

Best wishes to you, Linda. I hope your wait is short.

lindaw · 10-14-2006, 04:59 PM

Thank you Vanessa. I appresciate your thoughts.

love
linda

Sandy H · 10-14-2006, 07:26 PM

Linda, if you are getting scanned then its getting close!! All scans have to be done within two weeks and if they are one day off they have to be repeated and lets hope that does not happen. You will have to sign many papers I had 20 to do and takes about an hour with the Data Manager nurse. You do have the radiation still working so you are not without anything. Having been down this path I understand your frustration and every hour seems like days and every day seems like a weeks. Many of us are praying it comes soon. hugs, Sandy

Bev · 10-14-2006, 07:37 PM

Good luck Linda. Hoping the rads and tykerb will work for you. BB

lindaw · 10-14-2006, 08:09 PM

Deasr sandy and Bev

Thanks so much for thoughts. Good point Sandy -
I hadn't thought about the scans as part of the application. I would hate to repeat them as I have such trouble with the canulla.
I am keeping busy - cleaning, washing, cooking, watching dvd's, finishing my last study assignment for the year and going back to full time work after school holidays ( tomorrow). My husband and son arrive back tonight from a week in Sydney at soccer comp. Am going to the movies this afternoon.

Thanks again .

love
linda