[Trillium]

Just diagnosed with smoldering multiple myeloma

by Trillium on Mon Jun 27, 2016 1:23 am

I was just diagnosed with smoldering multiple myeloma on June 7, 2016. In February, I had my annual wellness checkup and routine labwork, and was told my labs were fine, just vitamin D3 levels were low. I assumed all was well, until I looked at the lab results myself a couple of weeks later, and discovered abnormal protein level of 9.4! When I questioned the certified nurse practi­tioner who ordered the tests, she then Googled it, and said it could indicate a blood or bone marrow cancer.

Shocked, I asked her, "You mean like multiple myeloma or leukemia?!". When she answered in the affirmative, I insisted on speaking to the doctor, who immediately got me in to see a local oncologist, who ordered testing. That oncologist diagnosed me with MGUS, but said I needed further testing and referred me to the UPMC Mario Lemieux Blood Cancer Center in Pittsburgh.

My husband and I are still a bit stunned that we thought I was healthy, but now have received a diagnosis of smoldering multiple myeloma, with risk of progression at 20% a year. My uncle passed away in 1978 at about my age (I am 63) with multiple myeloma, and although I under­stand treatments have vastly improved over the decades, it is disconcerting nonetheless.

Blessings to all my fellow Myeloma Beacon forum members!

[Tracy J]

Re: Just diagnosed with smoldering multiple myeloma

by Tracy J on Mon Jun 27, 2016 9:37 am

Welcome to the forum! I'm am sorry you've gotten this shocking news. The Myeloma Beacon will be a fantastic place for you to get support and information. Welcome to you.

[TCG]

Re: Just diagnosed with smoldering multiple myeloma

by TCG on Tue Jun 28, 2016 11:40 pm

My husband was just diagnosed on June 6th so I'm new here. I'm just learning so much about this disease. This forum has been a savior to me. I'm sorry you have to deal with this, but as you can see, you are not alone.

[Multibilly]

Re: Just diagnosed with smoldering multiple myeloma

by Multibilly on Wed Jun 29, 2016 6:04 pm

Hi Trillum,

Welcome to the forum from a fellow smolderer.

At some point, you may want to consider a road trip to be seen by a facility with some top multiple myeloma specialists to get a second opinion on your diagnosis and to have that specialist relationship already in place should you ever need treatment. Below is a link to various facilities with multiple myeloma specialists on their staff.

https://myelomabeacon.org/resources/treatment-centers/