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I have mgus and I ask the doctor how am I doing
His answer is "your blood work looks good"
That is all I get from him. So, I am wondering if there are. Any changes or system that I should keep in mind?
Hazel,
My first two Oncologists were not MM Specialists and I did not know that. After doing research, I started knowing more than they did and it was scary. The MMTeam told me to go to a Hematologist/Oncologist who was a MM Specialist. The Multiple Myeloma Research Foundation has a list of MM Specialists around the country. HTTPS://www.themmrf.org
They also have Patient Navigators you can talk to. During my research, I saw that with my translocation, I would be high risk to progress, so I switched doctors and got another bone marrow biopsy. I had progressed to Smoldering MM. Hopefully you will never progress. Print out all your blood tests and compare them to the last ones. Note the changes good or bad, so you can ask your doctor questions. The Multiple Myeloma Research Foundation also has a Patient Handbook you can print or download. It will help you understand your blood labs. They also give you a list of questions to ask your doctor.
In regards to changes, if you are super thirsty or nauseous, your kidneys are being affected. Always drink pure water over any other drink.
Paula🌹
How do you dig further when your oncologist does not really explain anything and if asked, his answers are always vague, short with not much substance?
What symptoms should someone with MGUS watch out for, and what changes should they keep in mind?
It's great that your blood work looks good! While MGUS often has no symptoms, there are definitely signs worth keeping an eye on that could indicate things are changing.
Here are the key symptoms to watch for:
- Bone pain — Show Full Answer
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