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gbrum1952
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Posted: Thu Oct 1st, 2009 06:55 pm |
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Is MGUS part of the myeloma spectrum, as I was told by UAMS-MIRT, or a separate entity, as seems to be espoused by MAYO and others?
At age 56, M-spike .5, FLC ratio in normal range, in "low risk" as defined by the Freelite Binding Site risk stratification model, what should I be expecting? The Binding Site shows about 14% in my current status progress in 20 years, but UAMS-MIRT does not agree with the Freelite Binding Site risk stratification model.
It's difficult to cope with the uncertainty. Are researchers getting close to determining which MGUS will progress and which will not?
When one doc says to not worry, it's nothing; and another doc says it's first phase of MM, then it begs the question:Who wouldn't be rattled, confused, and anxious?
Thanks for any info regarding this topic.
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Posted: Fri Oct 2nd, 2009 08:12 pm |
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Hi,
Here is a reply from Dr. Guido Tricot, the Director of the Myeloma Program at Huntsman Cancer Institute:
"MGUS is an early form of myeloma that does not require treatment yet. The key issue is to be sure that you are really dealing with MGUS, which does not require treatment, and not with early myeloma, which would require treatment.
A complete work-up, incuding MRI and/or PET/CT scan, FISH, and cytogenetics is required to determine this accurately. Free light chains alone is not sufficient.
I agree with the MAYO assessment that if you really are dealing with MGUS, having a low level of serum freelights has a better prognosis."
Please let us know if you have any other questions.
Take care,
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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gbrum1952
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Posted: Fri Oct 2nd, 2009 08:56 pm |
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Thank you for your reply. I have had the complete work-up of all the tests you mentioned at UAMS-MIRT. Everything is within normal range; gene ex. profiling, FISH, etc. all "low risk" with no genetic "deletion" problems, etc. M-spike has remained steady at .5 from the time it was discovered (about a year and a half).
Is 18 months enough time to determine that it is really MGUS stage? (I am on SWOG 120 observational trial with lots of tests,PET, bone marrow,serum, etc. & go back in March 2010 to UAMS-MIRT).
Would age 56 be considered young for this finding, and, if so,would this "younger" age at diagnosis predispose to higher risk of progression, even though I am in "low risk" according to all tests so far?
I suppose whether you call it MGUS or early stage myeloma is just a form of wordplay, but one infers a far greater level of severity upon hearing the word "myeloma." One also infers a certainty of progression upon hearing the word "myeloma," yet most information about MGUS states that an MGUS patient is far less likely to die of myeloma than from something else.
Do you view MGUS as certain to progress, if given enough time? I was taking some solace in leaning on the probable 70-80 chance that I will not progress, but now I'm thinking that may be too optimistic. Given my age, please tell me how you think I should be looking at my situation?
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Posted: Mon Oct 5th, 2009 04:44 pm |
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Hi,
Here's a follow-up response from Dr. Tricot:
"It appears that you have indeed MGUS and not myeloma. If you have been stable for 18 months, that confirms the diagnosis of MGUS. Follow-up of your myeloma markers every 3 months and seeing a myeloma doctor every 6 months would be approriate. Your young age does not make it more likely that you will progress to myeloma.
In terms of MGUS progression, probably less than 1% of patients with MGUS progress to myeloma per year."
Let us know if there's anything else we can do for you.
Chat Moderator
Huntsman Cancer Institute Myeloma Program
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