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Stage I Or MGUS??

by honoria
New with questions. I have had MGUS since 1999, with an M-spike, sometimes 0.3, sometimes 0.6. Last exam showed 0.2.

The Freelite test shows increased Kappa to 3.18 mg/dL(norm 0.33-1.94), normal Lambda of 1.20 mg/dL(norm 0.57-2.63). Kappa/Lambda ratio showed 2.65 mg/dL (norm 0.26-1.65).

With the ratio being so out of range, does that increase to Stage I instead of MGUS? This ratio is the highest it's ever been, although, it's always above the norm.

The LDH was normal at 147 and IgG (800), IgA (234), IgM (162) were normal. I am told that I am IgA Kappa, and I don't know how to tell that, either. This is a very confusing disease!

I recently did a 24-hr urine, and the results showed small amount of protein, yet, on my serum albumin test, it was normal.

How worried should I be?

Thanks for any help.

  • Hello! Although I have authored a book on myeloma, Living with Multiple Myeloma and post daily on my blog

    {link deleted by admin. http://cancerforums.net/viewtopic.php?t=12696 as amended http://cancerforums.net/viewtopic.php?t=7121 ... link did not work anyhow so I could not even check it out. Please PM an adiministrator for approval} ,

    I am not a physician. I would like to approach your situation from a different, positive perspective. Yes! I know it is difficult watching and waiting for your myeloma to appear. (and it will appear eventually) But look at it this way. Like many myeloma patients, by the time mine was diagnosed in April, 2007, I had suffered severe bone damage. My myeloma is under control. But the bone damage, although somewhat better, continues to be painful and limit my activity. So, the way I see it, you are in great shape! You can watch and monitor your myeloma, treating it before any damage becomes permanent. And, because the new drugs are working so well, your life expectancy should be measured in decades not years. Cool, right!? Good luck! Feel free to e-mail with questions anytime. Glad to help- Pat
    - Pat Killingsworth, 5 years ago
  • Hi Pat,

    Thank you for your very positive input of my condition. You are so up on myeloma to have written a book, which makes me feel even better when you state that the new drugs can help people measure their life expectancy in decades instead of years.

    I also have bone loss, which is why the Dr. did the myeloma testing initially. FosamaxD has helped tremendously. I also had Aredia infusions some years back for 18 months, which also helped. So far, no jawbone injury!

    I am happy to hear that your myeloma is under control, and I hope it stays that way for many, many years. I am hearing of some new drugs for this disease, so hopefully, they will all pan out.

    I am also hearing, that one day sooner than we may think, myeloma may become chronic instead of terminal. There is hope.

    I am reading your site which is very interesting and a learning process for me.

    Thank you.
    - honoria, 5 years ago
  • Ms. Killingsworth, you have no business telling Honoraria that her MGUS will eventually progress to multiple myeloma. The truth is that only 1.5% per year of all MGUS patients convert to MM. That means the large majority never convert. If you have said otherwise in your book, then you are striking needless fear into the hearts of many MGUS patients with your misinformation.
    - DaisyDo, 4 years ago
  • You are right that not all MGUS should expect to have active MM. But considering the newer theory that all MM began as MGUS/smoldering mm, anyone with MGUS should be prepared for the distinct possibility.
    - McTwirly, 4 years ago
  • Yes, but that's quite different than saying "it will appear eventually," because in matter of fact, at the rate of 1.5% a year conversion, still after 20 years only about 30% of MGUS patients will have converted to multiple myeloma. So most people never convert.

    So yes, it has to be monitored, but to tell a person, "it will appear eventually," is entirely wrong and displays an ignorance of the process. The fact of the matter is that most people mount a successful immune response to the aberrant stem cells, and as long as they can maintain this immune response they do not convert to active MM.

    Ms. Killingsworth should not be writing a book on the subject if this is her level of ignorance on the topic!
    - DaisyDo, 4 years ago

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