Patient Comments: Multiple Myeloma - Symptoms

What were the symptoms of your multiple myeloma?

Comment from: MM fighter, 75 or over Female (Patient) Published: December 30

About 4 years ago I developed a small depression in my scalp. During a routine visit to my internist, I mentioned this to him. After some deliberation we agreed that I should have a skull x-Ray. The x-ray suggested MM (multiple myeloma). That was followed by a bone scan and a bone marrow test, which confirmed MGUS (monoclonal gammopathy of unknown significance). In a year it had progressed to smoldering MM, and then to full-blown MM after another year. I've been treated with Revlimid and dexamethasone, which caused blood clots in both lungs; then with Velcade and dexamethasone which caused extremely painful neuropathy in my legs and hands. Now I'm being treated with Alkeran and prednisone. I'm on my 11th cycle and doing well. Aside from anemia and fatigue, my only problems have been caused by treatments and the medication. I'm very lucky.

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Comment from: MSB, 45-54 Female (Caregiver) Published: October 24

My father was diagnosed with multiple myeloma in October of 2012. He had previously gone to the doctor numerous times about a pain he had in his left shoulder blade. It actually began to hurt about 7 years ago. The doctors said all was ok over and over again. In October he became very fatigued and was starting to have severe pain. Once again we went to the doctor and they said all blood and urine analyses were normal. As he continued to get worse we finally decided that hospital was where he needed to be. That is when they found too much calcium in his urine which gave them reason to run further testing. The diagnosis was multiple myeloma. My father passed away in May of this year despite chemotherapy and radiation treatments. They had found a tumor in his back and did emergency surgery and removed it. He remained in the hospital and 2 weeks later the tumor had returned to be the same size as it was before surgery. They decided to re-do the surgery and my father never recovered, he passed away a few days later.

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Comment from: Jazz of San Diego, 65-74 Female (Patient) Published: February 24

I had no new symptoms when I went in for my regular check up with my doctor. She ran a blood test and noticed an increase in my anemia. I had been on the edge, but now I was below the edge. She sent me to a hemotologist. I had no idea that she was checking for everything from anemia to leukemia or multiple myeloma. I was thinking "iron" pills. I had a bone biopsy that day and got the results about three weeks later at my next available appointment. It was a shock, and I was not ready for it. I was told that at this time it is rarely curable but treatable. No time frame of survival was given, and I was not able to ask any other questions as I had never heard of multiple myeloma. After three days of shock, I went on the web and gathered all the info I could and got my grown sons to help me look up more info. My whole family was in shock. I have been undergoing treatment for almost two years now, and I am tired, I have kidney problems, and I have one blood clot so far. So I am doing OK. I do go to a support group in San Diego, and it has been more then helpful.

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Comment from: First Daughter, 45-54 Male (Caregiver) Published: February 24

My dad was 51 when his multiple myeloma was diagnosed in stage III. He had been very tired for quite some time. (One ignored hallmark of the disease manifested about three years previously. He had always donated blood but was refused at about 48 because his iron was low. No one advised him to immediately check into that. As a young and strong man, his iron should not have been that low ever) However, he was a firefighter getting ready for retirement, so, we all believed he would be much better after a few months in his dream home in Wisconsin. He became more and more exhausted. Finally, when he was sleeping close to round the clock, my aunt forced the issue that he go to the hospital immediately. (She was a nurse.) He was diagnosed within one day as his kidneys were shutting down. He lived beyond any expectation of the medical community (some good years). He worked hard to remodel his dream home, got to meet a few new grandchildren and died at 55. Moral: Low iron counts in an otherwise healthy younger male are never "normal." Extreme exhaustion in anyone is not always a sign of depression or fatigue. Multiple myeloma can strike any age or demographic; Dad didn't fit any of the stereotypes.

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Comment from: gspieg, 55-64 Male (Patient) Published: October 28

My multiple myeloma started with a headache that wouldn't go away. It became slightly more severe with time. After a few weeks, enough was enough. I went to a walk-in clinic and asked for treatment. The physician ordered an immediate CT of my head and neck area. The CT was negative, and I was referred to a neurologist. I was misdiagnosed initially, and it was six months before I had another CT (or MRI). That test showed a tumor had formed at the base of my skull and the top of my spinal column. By then, I was experiencing ringing in my ears, double-vision, fatigue and pain in my neck and upper back. The tumor was biopsied and determined to be a plasmacytoma. I was referred to an oncologist who tested my blood and bone marrow and diagnosed my multiple myeloma. I went through radiation therapy to destroy the tumor. Either the tumor or the treatment destroyed part of my C-1 and C-2 cervical vertebrae. After the tumor was found, the initial CT was re-examined and a “shadow” was noted where the tumor formed. I was treated with thalidomide and dexamethasone for several months. My M-protein level began to rise and eventually got to 1.7.

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Multiple Myeloma - Prognosis Question: What is the prognosis for your multiple myeloma?
Multiple Myeloma - Diagnosis Question: Describe the tests and exams that led to a diagnosis of multiple myeloma.
Multiple Myeloma - Treatment Question: What kinds of treatment have you, a friend, or loved one received for multiple myeloma?
Multiple Myeloma - Follow-up care Question: What type of follow-up care do you or a relative receive for multiple myeloma?

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