Suggestions For Women diagnosed with Brain Mets

[Christine]

I came across an interesting "to do" list for women diagnosed with brain tumors:

http://www.cedars-sinai.edu/1109.html

Hugs
Christine

[Gina]

...and although it was designed specifically with brain mets in mind, I personally, think it is good advice for us all to follow.

I am a strong believer in the notebook/binder idea. After trying MANY different ways to keep my thousands of papers organized, I stumbled upon the medium weight page protectors in Staples on sale one day and have used the same brand ever since.

The reason I like them is that often..., for whatever reasons, you end up with multiple copies of certain results and NO copies (usually of the MOST important stuff..smile) of others... By arranging a 3" or 4" or even 5" 3-ring binder with ample top - loading page protectors, you can simply add, in chronological order, the multiple copies in behind the original and where you are missing items, you can leave a few empty page protectors as PLACE holders and reminders until you call the office and have them fax over the missing information. It is very good to keep at least one original and one back up copy of all the really important stuff and I can not tell you how much time this simple strategy has saved me not only in gathering detailed information but in processing disability and insurance paperwork. Plus, it looks nice and is very neat. If you loose your binder, you can always request your onc office to copy your whole file and resend it to you. Another thing is to keep one binder with only originals and a second with only copies... When you have important doctor's appointments, especially with a surgeon or a second opinion onc, you can take the extra binder with you to the appointment...not only do you come across looking totally prepared and organized, but you often can use the binder for a sort of "show and tell" to give the doctor a much better bird's eye view of your case in a much shorter amount of time. As we all know, their per patient time is at a premium.

Again, thanks for sharing. Also, I was absolutely delighted to learn your most recent scans were clean, especially given the fact that many girls on the board and even those at my local practice have recently just been DX with her-2 brain mets for the first time or have relapsed and I wondered if the season of the year had anything to do with that???. Anyhow, keep up the good work...are you still taking tumeric regularly. I read today that it helps the glutathione regulation...another key point we have all been discussing, I just didn't ever know there was a positive benefit and connection between the tumeric and the glutathione.

If you and Joe are ever in the DC area for a conference or anything, please let's get together again soon.

Take care,
Gina