Patient Comments: Multiple Myeloma - Prognosis

What is the prognosis for your multiple myeloma?

Comment from: Eloise Marage, 55-64 Female (Patient) Published: October 29

I was diagnosed with multiple myeloma (MM) August of 2004. My doctor had checked for more than a year to find why I was anemic. When he could not find why, he sent me to a hemo-oncology clinic. They found that it was on the border line and opted to observe for 6 months. I was given thalidomide for one year. In 2006, I was given a bone marrow biopsy after which I was told to prepare for a stem cell transplant (SCT). The transplant lasted for 4 1/2 years. In Oct 2011 I started treatment again and in April 2012 I had the 2nd SCT. In 11/12 to 6/13 I did the 3rd cycle of treatment. The 4th cycle started in 10/13 to present. My treatment since 2011 has been Revlimid, Velcade and dexamethasone.

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Comment from: Becky Craze, 65-74 Female (Patient) Published: October 15

I started down the path of MM (multiple myeloma) about three years ago. In May I went to Ohio State to check into a stem cell transplant and they are projecting that in the next two years I will need one, but my local oncologist says it won't be that long. So far I have been able to dodge chemotherapy but I am going for blood work every 6 weeks now. The last M-1 spike was 4.8 and judging from past progression my doctor thinks it will be 5.2 this time.

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Comment from: Myeloma, 25-34 Male (Patient) Published: October 07

I am a 25 years old male with multiple myeloma diagnosed in early 2013. Since then I had 8 long months of chemotherapy then I had auto stem cell transplant which also involved heavy dose of chemotherapy. It has been 4 months since auto stem cell transplant during this period my protein counts have been high and keeps going up my doctor is also confused what needs to be done next to control this aggressive disease.

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Comment from: 65-74 Male (Patient) Published: February 06

I had a fall at work which I did not consider serious but eventually saw my GP about as I was always tired - sleeping for hours- and had pain in my ribs and left leg; the latter I put down to the fall. The GP misdiagnosed the pain as nerve damage and prescribed a large dose of anti-inflammatories which shut down my kidneys (already damaged by the myeloma) and nearly killed me. Blood tests revealed the myeloma and the fact that my kidneys were functioning at about 10%. I have had several courses of chemo (Velcade) and I am, at the moment, stable with about 26% kidney function. I also have lumbar plexoplathy and have suffered a heart attack. So it is sometimes difficult to know which of my ailments is responsible for which symptoms.

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Comment from: John, 55-64 (Patient) Published: July 07

I was diagnosed with multiple myeloma 8 years ago. I had fractured spine requiring fixation. I am on lenalidomide and cyclophosphamide 10 and 50 mg weekly. My protein levels are still rising.

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Comment from: Joseph1946, 65-74 Male (Patient) Published: February 20

Prognosis means, ultimately, "how long do I have?" But that question is not a valid use of survival statistics, which should be used primarily in assessing the best treatment for the stage that is presenting. This is because it is based on dead people. You are not dead, so you are not included. I was diagnosed with Stage III-B MM, type lambda, (- B means with kidney damage)with 90% marrow plasma cells, in March of 1993. I had a three-year remission with my first chemo of intermittent high-dose dexamethasone. After three years, when a small amount of Bence-Jones protein was found, I enrolled in a clinical trial "Intensification of Stem Cell Transplantation," in November of 1996, and have had no detectable disease since that time. I still monitor, but now at six-month intervals. Prognosis? Anything is possible, even for late stage MM like mine. When people ask me what I do, I tell them that I "rewrite medical statistics."

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Comment from: tim, 45-54 Male (Patient) Published: June 11

I'm 45 years old and found out two months ago that I have multiple myeloma. I went to the hospital for neck pains and my c-2 vertebra was fractured. I have been doing radiation and chemotherapy. I'm at stage 3 and they have me scheduled to have a stem cell and a bone marrow transplant. To be honest I'm very scared about this because it has not been a very comfortable ride so far. I'm a single father and really hate for my kids to see me weak and down.

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Multiple Myeloma - Symptoms Question: What were the symptoms of 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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