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As I always type on this site, besides scans, worry first about where your tumor markers are...get base lines for both your CA 27/29 and your serum Her-2, then INSIST that these numbers be checked regularly...although they are NOT fullproof by ANY means...they will certainly alert you should anything start going on...the argument is always what indicates spread first the PET/MRI/CT chicken or the Blood marker eggs??? IN my experience 100 times out of 100 times, the blood markers have indicated disease progression way sooner than any scan..., but every body's biochem is distinct, but if you don't start testing your markers now, you won't have anything to compare them with later when YOU MAY REALLY NEED THEM...also, pay close attention to your regular CBC and blood chemistries... Often, in her-2 cases, esp, elevated grans on the CBC and low lymphs are early warning signs of upcoming problems. Likewise, watch your liver enzymes, (esp. the GGt), and keep a close watch on your ALP... elevated liver enzymes can indicate (but not always mean) liver mets... high ALP is often an indicator of bone mets...FYI, Gina
PS. since you are relatively new to all of this ... another tip I enjoy sharing is to get a 3" to 4 " 3-ring binder from STaples or Home Depot and fill it full of plastic 3-ring page protectors... Then, gather all the PAPERS you have about your case into the binder in chronological order and then, following each onc appointment put a copy of the questions you asked and your notes of what the onc said along with your patient copy of CBC and other scans and blood work..also note any supplements your are using or any diet changes. .TRUST me...the PROUD owner of 8 of these over-stuffed binders, at some point in the not too distant future you will be thankful that you did this. Another trick is to make one or more copies of EACH page before you put them into the page protector. That way, you can pull out a copy of say, a questionable bloodwork result and send or give it to your onc or other interested party without losing sight of the ORIGINAL...TRUST me...this one tip can be a life saver. Also, if down the road, heaven forbid, you need to file your case in triplicate for social security or work disability, you will have a lot of the work already done. Cheers, Gina (DX '97/mets '99)
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