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Living with fear for 20 years

by RagtopSL on Sun Mar 27, 2011 4:24 am

I was diagnosed with Smoldering Myeloma in the summer of 1991; at that I was instructed to have my blood checked every three months. I have seen doctors at New York Hospital, St. Vincents Myeloma Center & now NYU Langone Medical Center. I am constantly worried about my cancer progressing to multiple myeloma. I wish I could find out the odds of this progression?

Who do you know with myeloma?: Me
When were you/they diagnosed?: 1991
Age at diagnosis: 41


by Parker Peter on Sun Mar 27, 2011 7:25 am

You're a pretty lucky guy that your SMM has not become active after 20 years. I heard about a very important paper about the progression from SMM to multiple myeloma coming in late 2011. The lead author will be Professor Graham Colditz. Then a paper from WashU-researchers about the molecular progression from Mgus to SMM and multiple myeloma will be published in late 2011. Perhaps you can help us to find out more about these projects. I'm sure that the papers will give you some answers. Peter

Parker Peter

Re: Living with fear for 20 years

by Boris Simkovich on Sun Mar 27, 2011 9:22 am

Hi RagtopSL,

Welcome to the forum, and congratulations for keeping your myeloma under control for so long. It's really impressive.

The Beacon has published a number of articles about smoldering myeloma that should be helpful to you. You can see them at this page:

Included among the articles are several that deal with the prognosis associated with having smoldering multiple myeloma. I think you'll find that, the longer a smoldering myeloma patient lives without progressing to active myeloma, the lower the chances are that they'll progress in any given 1- or 5-year period..

You also may want to look through the postings here in the forum for discussions related to smoldering myeloma. I believe Dr. Berenson answered a question or two on the subject at one point.

Good luck ... and keep us posted on how you're doing,


Boris Simkovich
Name: Boris Simkovich
Publisher & Founder
The Myeloma Beacon

Re: Living with fear for 20 years

by TerryH on Sun Mar 27, 2011 4:44 pm

Here is the posting from Dr. Berenson that I think Boris was referring to:

Among other things, it says that the risk of progressing from "smoldering myeloma to active disease is on the average of about 10% per year for the first 5 years, about 7% per year for the next 5 years and about 3% per year after that."

Be sure to check out the posting for more information, including a link to a journal article on the subject which you can read online.

Good luck!


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