my husband was diagnosed with M M almost 7 years ago and goes to cancer center in columbus ohio every 6 months. He has had no symptoms, no treat ment. his doctor said he is the only patient he has had to go this long and his IGA levels keep coming down, slightly but down. It was almost 1800 now 1440, what is the significance in this? Can we breath easier?
lamdba light chain down also to 495.
there are times we wish his kidney doctor had never got this high protein level in the first place. which led to a bone marrow, the rest is history, with no insurance and $1,000,s of dollars in debt now.
is there a point where we can think this is not what is going to kill him... ? he is 63 and other wise very healthy.
thanks!
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Re: 7 years with multiple myeloma no symptoms over the hump?
Were you diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance) or Smoldering (Inactive) Multiple Myeloma. Based on your follow-up schedule I presume MGUS unless your Doctor spaced out the follow-up. This pre-malignant condition is defined by having less then 3gm M-spike and less than 10% bone marrow plasma cells (myeloma cells).
It has an annual rate of progression of 1%. This does not change. But the length of your stable disease should be very reassuring and hopefully you will not progress to active disease requiring therapy.
If you are smoldering the rate of progression is ~10% per year. However, after the 1st 3-5 years it is more like that of MGUS- so 1%- and you are beyond that.
Our hope is that you will continue to remain stable and not progress. I would recommend that you try not to walk around on a daily basis thinking this is going to kill him. Many people walk around with MGUS and pass from other non-related issues. Try to put it in the back orleast side of your mind.
HOWEVER, follow-up remains important. We would not want miss progression of disease. A disease that we can treat and control for long periods of time. I am sorry to hear of the finicial burden you have encumbered, but -in my mind- all was and remains necessary.
It has an annual rate of progression of 1%. This does not change. But the length of your stable disease should be very reassuring and hopefully you will not progress to active disease requiring therapy.
If you are smoldering the rate of progression is ~10% per year. However, after the 1st 3-5 years it is more like that of MGUS- so 1%- and you are beyond that.
Our hope is that you will continue to remain stable and not progress. I would recommend that you try not to walk around on a daily basis thinking this is going to kill him. Many people walk around with MGUS and pass from other non-related issues. Try to put it in the back orleast side of your mind.
HOWEVER, follow-up remains important. We would not want miss progression of disease. A disease that we can treat and control for long periods of time. I am sorry to hear of the finicial burden you have encumbered, but -in my mind- all was and remains necessary.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
2 posts
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