[Tracy J]

Re: Initial test results - should I get a second opinion?

by Tracy J on Tue Sep 15, 2015 9:25 am

Sorry you need to be here, but I'm glad you found us.

I second what Multibilly said about making sure you get to a heme/onc doctor. I'm glad to see you already have an appointment scheduled. Let us know what happens there!

Just a quick note: if they are looking for AL amyloidosis, and they SHOULD be looking for AL amyloidosis, they need to do Congo Red Stain on any and all biopsy samples they get. I would certainly hope your heme/ onc doctor knows this, but you never know...

If you end up with a diagnosis like AL amyloidosis, MGUS, or active myeloma, we all always recommend that you make your way to a center of excellence - a place that sees a lot of myeloma patients - at least once toward the beginning of your treatment. Most of us seem to go to big myeloma centers regularly.

Good luck, and I'll be waiting to see what develops!
Tracy

[mrzippy]

Re: Initial test results - should I get a second opinion?

by mrzippy on Tue Sep 15, 2015 6:21 pm

Tracy,

thanks for the encouragement! I go back to my oncologist in 2 weeks to find out what is next. I'll post an update when I know more.

Nathan