I have driven to Mayo Clinic from south central PA since diagnosed with MGUS in 2002. We call our trips vacations. Please see my detailed 3/31 post for history.of my journey. I hope it gives some hope and encouragement to you.
Country of Residence
United States of America
Blood disorders, Cancer, Bone, joint, and muscle disorders
In 2002 a Rheumatologist picked up one blood elevation that led him to discover MGUS. From that point forward I worked with a local hematologist /oncologist and a doctor at Mayo Clinic in Rochester. Life went on as normal, no worry, with 6-month check-ups until 2004. A baseline bone marrow study revealed MGUS was now multiple myeloma. The only life change was Labs every 3 to 4 months without worry until 20016 when Labs indicated I had to start treatment for the meloma. I did not have to wait for disease symptoms and/or damage to indicate advanced disease, need for treatment. Yes, I had medical issues over those years but they may have been there without the MM. Today I am near remission for the second time, hoping for a vacation from treatment in the not-too-distant future. My faith kept me from fearing this disease and I have been able to give hope to other MM patients along the way. I will be 78 this year, and still enjoying life. Side effects of treatment are sometimes in my way, but I find things to do during those times to keep giving meaning to my life. We all make decisions that give us the most peace. I saw great advancement in treatment from 2002 to 2016. Saw birth of 9th grandchild and 3 great grandchildren, weddings and graduations, traveled, climbed boulders in CA, wrote books, and served God in many ways. All with peace that health was confirmed every 6 months. Nothing to fear, no cause for worry.
Life is still great. I know my enemy and choose the battle. Not everyone can say that.
Blessings to you going forward. Nancy
Good morning, beepoop.
I have wondered if you got the information you hoped for, and if you have confidence to reach out in the future if you have questions or concerns. There is a community ready and willing to do all possible to be here for you.
Sat, Feb 23 11:05am · Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis? in Blood Cancers & Disorders
Hello again @beepoop. I am sorry about your father, and getting your MGUS diagnosis at that time must have been so difficult.
After my 2002 MGUS diagnosis, my Mayo doctor diagnosed Igg kappa smoldering myeloma in 2004. He established the number goal that would require treatment to begin, and he and my local physician followed my status until 2016 when I started treatment. For those 12 years I was very active in spite of spinal surgeries and anemia. But during that wait time, and now your wait time, there was major progress in blood cancer research. My current treatment options didn't even exist those 15 years ago. Or one year ago. I was told that we will manage it like a chronic disease, changing treatment as indicated. And that is what happens. I wish you the same peace of mind as you go forward. Your life has meaning and purpose, and I have found that doesn't have to change. Having faith, family and friends gives me such support that hope is ever present. I wish the same for you.
Hello@ bepoop. I am Nancy, and have had significant history with myeloma. Can you tell me about yourself, when and where you were diagnosed? I hope you have been reassured that there is much cause for hope as you follow this diagnosis into your future. My journey started in 2002, so I want to give you all positives possible. But first, about you.