Multiple Myeloma – Links + References

When you first look up Multiple Myeloma (MM) on the web, you get a fairly pessimistic outlook.  Wikipedia (http://en.wikipedia.org/wiki/Multiple_myeloma) says median survival is 3-4 years with conventional treatment.  Advanced treatment may get you 5-7 years.  The Mayo Clinic gives all sorts of details, but no prognosis.  http://www.mayoclinic.com/health/multiple-myeloma/DS00415.  Similarly, the U.S. National Library of Medicine site, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001609/ provides lots of information, but no hint of survival rates.  To quote, “Survival of people with multiple myeloma depends on the patient's age and the stage of disease. Some cases are very aggressive, while others take years to get worse.”  


The American Cancer Society page on MM (http://www.cancer.org/Cancer/MultipleMyeloma/index) has lots of information.  Their MM booklet is somewhat pessimistic: 
The American Cancer Society's most recent estimates for multiple myeloma in the United
States are for 2012:
•About 21,700 new cases will be diagnosed (12,190 in men and 9,510 in women).
•About 10,710 deaths are expected to occur (6,020 in men and 4,690 in women).
The 5-year relative survival rate for multiple myeloma is around 40%.
I believe my MM is classified as Stage I.  They say the median survival for stage I is 62 months.

Dr Levine gave us booklets from the Leukemia & Lymphoma Society on Myeloma and Blood and Marrow Stem Cell Transplantation.  You can get a .pdf of each of these from http://www.lls.org/resourcecenter/freeeducationmaterials/myeloma/myeloma and http://www.lls.org/#/resourcecenter/freeeducationmaterials/treatment/.  Barbie and I have found these booklets very helpful, especially the first one on Myeloma.  It does not get all that specific in terms of the prognosis, but it remains hopeful: “Myeloma is a cancer of the plasma cells in the bone marrow. It is estimated that 20,520 new cases of myeloma will be diagnosed in 2011. Although myeloma is incurable, this is a very hopeful time for patients. Dramatic advancements in new treatments over the past decade are resulting in better overall survival, allowing many patients to maintain a good quality of life for years. An estimated 74,800 people in the United States are living with, or are in remission from, myeloma.”

I find I only read the parts of the documents that apply directly to my case.  I had an MGUS (Monoclonal Gammopathy of Unknown Significance), a blood level that was detected several years ago, probably around my second pulmonary embolism in 2004.  I had a bone marrow biopsy then, which proved to be negative.  Then some time later another blood test raised the issue, and additional tests caused the hematologist to decide everything was still benign.  We are now wondering why someone didn’t call for ongoing monitoring tests.  I do not have kidney problems, high calcium readings in the blood, fatigue, or recurrent infections.  Primarily I have bones that have been weakened to the point where they break without any traumatic event.  The recommended treatment is for an Autologous Stem Cell Transplant.  Therefore I ignore everything they say about Allogenic Stem Cell Transplants.  Funny thing, how something that is happening to you yourself can concentrate the mind.