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DiscussionMGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio
Blood Cancers & Disorders | Last Active: Aug 3 1:59pm | Replies (203)Comment receiving replies
Replies to "that sounds like a plan, I am always googling and my doctor says dont google but..."
Greetings from Arkansas. I SO relate to the anxiety of getting fragmented information when they first discover blood abnormalities. I literally made myself sick worrying. Dr Google is not your friend. The more I read, the more panicked I got which is really not my jam! I’m used to being a calm voice in the storm, not the cyclone.
I have MGUS and was diagnosed almost two years ago now. We are watching but I try not to think about it as waiting. My MGUS may never progress. And I’m the unlikely event that it does, the treatment for Multiple Myeloma is much improved, according to my hematologist/oncologist.
I get bloodwork every three months. I get a CT scan annually that checks me head to toe for lesions. I live my life.
What worked for me was first finding a physician who is experienced in treating Multiple Myeloma. I wanted a specialist…hematologist/oncologist. Don’t let the oncologist part scare you. MGUS is not cancer.
Then you have to trust the process. Educate yourself about what they see in your blood that is giving them pause and how they will monitor your health. Do this by asking questions. Write them down. My initial appointment with my hem/onc doc was over an hour long. He was a trooper.
I never look at my lab results until I am sitting in the office with him. Others do it differently, but I think “My Chart” is the devil’s invention when it comes to this highly complex blood analysis. No good ever comes from heightened anxiety, especially when the source of your anxiety may be nothing to worry about.
Good luck! Glad you found our little community. Please update us as you travel this path. You are not alone.
Patty