← Return to Multiple Myeloma: Come introduce yourself and let's talk

Discussion
Comment receiving replies
@hopeful33250

Hello All

A Youtube video was recently released by Mayo Clinic regarding Multiple Myeloma and the disease progression. I was wondering if any of you had any early symptoms of this disease before the diagnosis came about. After looking at this video will you share your experience of being diagnosed?

Jump to this post


Replies to "Hello All A Youtube video was recently released by Mayo Clinic regarding Multiple Myeloma and the..."

Mum was recently diagnosed after a compression fracture on her spine after a fall.

@hopeful33250 Thank you for posting this, Theresa. I wonder if there is a transcript of this that I can order somewhere? I was diagnosed with MGUS/low-level non-Hodgkins lymphoma in November 2017. Bloodwork showed an escalation of symptoms in June this year. After repeat bone marrow and kidney biopsies, scans and more lab work, I was handed a diagnosis of smoldering multiple myeloma on Nov 15, about 5 weeks ago. I am on the wait-and-see protocol, especially since there is an underlying ultra-rare kidney disease that we are dealing with also. Each day is a gift, and i would love to find out where my case is on the spectrum for proclivity to advance to active myeloma.
Ginger

Thanks for sharing the video. The doc mentioned 3 lab tests are used to identify high risk SMM. I wonder what are the 3 tests?

Prior to diagnosis, I became increasingly fatigued for the last 12-15 months. I had also been sick more and more, for the year prior. I thought it was my age, (54), and working night shift for 9 years at a stressful job, with 12 hour shifts. In January, 2019, I had an upper respiratory infection and sinusitis. I developed left posterior rib pain, which I contributed to coughing. I seemed to never get over my illness. One seemed to bleed into the next one. One co-worker had even commented "Lisa, you are always sick". I had laughed, and told her I was just getting old.
In February, and March, 2019, I began some long overdue dental work. This included some deep cleaning-descaling of upper and lower teeth. The day after I had had this done on upper teeth, I had a rapid onset, severe head cold. This quickly developed into new onset asthma as well. Later that week, I finally went to my PCP. They ordered a chest x-ray, but no Labs, as I did not have any fever. The chest x-ray was abnormal, and suggested a chest CT. I was treated aggressively for the asthma and respiratory infection. 12 days later I had a chest CT. My lungs had cleared up from treatment, but they saw multiple lytic lesions on my thoracic and lumbar spine, suggestive of MM.
Thus, I had multiple lab work done, and was referred to a hematologist. I got my official MM diagnosis on June 20, 2019. My PCP was confounded, because my initial labs did not look that bad. My BMB, in June showed 40% MM. Skeletal study and PET, showed multiple, active lytic lesions throughout my skeleton, including my skull, spine, pelvis, hip, upper legs, and upper arms. My Transplant Hemotologist, at Mayo, agreed that I had had MM for a while, due to my heavy bone involvement. MM is not a cancer that is routinely screened for. 28 years ago, as a nursing student, my Med Surge text book had one big paragraph in it, about MM. Fatigue, in reased illnesses, and occasional sporatic pain in back, hip, ankle, were the only symptoms I had. I am a nurse, so I really though it was age, being post menopausal, working night shift, and just part of getting older.