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Re: Level of kFLC for MGUS or smoldering myeloma diagnosis?
I believe Dr. Cohen's numbers are incorrect. I believe the very abnormal FLC numbers that create such a high rate of progression were >100 or < 0.01 per the full NIH study.
Re: Level of kFLC for MGUS or smoldering myeloma diagnosis?
Confused,
I believe Dr. Cohen was referring to this study. http://bloodjournal.hematologylibrary.org/content/111/2/785.full.pdf
This indeed does put a high risk patient (meets all three risk criteria) at a 52% probability of progression at 2 years based on an FLC < 0.125. See Figure 3.
If you don't take into consideration the three risk factors in this study and just look at the FLC ratio, the average risk of progression in 2 years for all the risk groups is about 35% for those with an FLC ratio less than 0.125. See Figure 2.
I believe Dr. Cohen was referring to this study. http://bloodjournal.hematologylibrary.org/content/111/2/785.full.pdf
This indeed does put a high risk patient (meets all three risk criteria) at a 52% probability of progression at 2 years based on an FLC < 0.125. See Figure 3.
If you don't take into consideration the three risk factors in this study and just look at the FLC ratio, the average risk of progression in 2 years for all the risk groups is about 35% for those with an FLC ratio less than 0.125. See Figure 2.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Level of kFLC for MGUS or smoldering myeloma diagnosis?
Ok the risk factors in this study are different, one of them is BMPC's greater than 10% for Figure 3. Also for Figure 2, these patients were all smoldering myeloma to begin with.
My takeaway is you must be very careful when looking at these summaries and see the full report to truly understand. I mistakenly thought that my chances to progress in 2 years were 50% just because my FLC ratio was less than 0.125. I lost some sleep over this and now know that is not the case in my situation.
I still believe my risk is about 40% in 20 years due to 2/3 risk factors; type IgA and FLC less than 0.125. Since I am not SMM, these other figures do not apply, and since my FLC is not less than 0.01, the other study figures do not apply.
My takeaway is you must be very careful when looking at these summaries and see the full report to truly understand. I mistakenly thought that my chances to progress in 2 years were 50% just because my FLC ratio was less than 0.125. I lost some sleep over this and now know that is not the case in my situation.
I still believe my risk is about 40% in 20 years due to 2/3 risk factors; type IgA and FLC less than 0.125. Since I am not SMM, these other figures do not apply, and since my FLC is not less than 0.01, the other study figures do not apply.
Re: Level of kFLC for MGUS or smoldering myeloma diagnosis?
Hello all
Thank you for this thread. I have something to ask Multibilly:
In view of the following statement,
" I just gave up on trying to make sense out of these risk factors based on the lack of consensus in the medical industry. If I knew I was high risk or ultra high risk based on just my cytogenetics using the Mayo mSMART criteria
If you had t(14:16), +1q, del 13 what would your thoughts be? Using the Mayo guidelines 1 is high risk and the other 2 are intermediate. Does the t(14:16) trump the other 2?
Hope you can help.
Kay
Thank you for this thread. I have something to ask Multibilly:
In view of the following statement,
" I just gave up on trying to make sense out of these risk factors based on the lack of consensus in the medical industry. If I knew I was high risk or ultra high risk based on just my cytogenetics using the Mayo mSMART criteria
If you had t(14:16), +1q, del 13 what would your thoughts be? Using the Mayo guidelines 1 is high risk and the other 2 are intermediate. Does the t(14:16) trump the other 2?
Hope you can help.
Kay
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blessthischick - Name: Blessthischick
- Who do you know with myeloma?: Me (SMM)
- When were you/they diagnosed?: Oct 10th 2013
- Age at diagnosis: 46
Re: Level of kFLC for MGUS or smoldering myeloma diagnosis?
I would think that the t(14:16) would "trump" and that one would end up being classified as "high risk" based on what you said here. It's not like any of the mutations listed in mSMART are of the favorable type and would help cancel out the t(14:16).
BTW, it is my understanding that favorable mutations don't generally generally cancel out unfavorable mutations ... at least that is what I recall when reading some recent Beacon news article.
But I'm not a doc. So please check with one.
BTW, it is my understanding that favorable mutations don't generally generally cancel out unfavorable mutations ... at least that is what I recall when reading some recent Beacon news article.
But I'm not a doc. So please check with one.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Level of kFLC for MGUS or smoldering myeloma diagnosis?
Hello Mulibilly & thank you for your reply
I am seeing an eminent professor pretty soon. It is important for me to know my outlook & I don't feel that my genetics and my lambda excess flc ratio of 0.03 bode well for me. My consultant has told me that I may never progress, which I suppose strictly speaking is true, but from what I have read, the discussions I have had, and overall the way I feel, I think this would be highly unlikely and I think he is giving me false hope. I have decided to live my life based on the worst case scenario, i.e. prepare for the worst and hope for the best, and my consultant's rather rosy outlook on things is making me really angry.
It took me 6 months to dredge my genetic results out of him, and they left me shocked and upset. I would rather have gotten over the shock 6 months earlier. When I asked him if there was ANYTHING else I should know that he hasn't told me, he said that my recent cardiac marker results for systemic AL amyloidosis are on the rise, although within normal range. I am awaiting the repeat results now.
I have major decisions to make about my life (as we all do) which unfortunately has been plagued with chronic illness since I was a baby. I was driving the other day, the sun was shining, I felt pretty well, and I felt I could live forever, how could I have the diagnoses I have. There must be a mistake? I think when one feels like that one can get lulled into a false sense of security and make wrong decisions.
For me my biggest decision is should I retire, I have an extremely stressful job and feel I don't want any added stress on my life so I am seriously considering giving up my 27 year career. However, the decision I make now must be suitable for the immediate, the medium, and the longer term should things go well with me
Difficult times ... but I am sure all on here are having their fair share of difficult times as well
I feel once I have seen the professor there will be some clarity. I hope so anyway!!
Many thanks again, Kay
I am seeing an eminent professor pretty soon. It is important for me to know my outlook & I don't feel that my genetics and my lambda excess flc ratio of 0.03 bode well for me. My consultant has told me that I may never progress, which I suppose strictly speaking is true, but from what I have read, the discussions I have had, and overall the way I feel, I think this would be highly unlikely and I think he is giving me false hope. I have decided to live my life based on the worst case scenario, i.e. prepare for the worst and hope for the best, and my consultant's rather rosy outlook on things is making me really angry.
It took me 6 months to dredge my genetic results out of him, and they left me shocked and upset. I would rather have gotten over the shock 6 months earlier. When I asked him if there was ANYTHING else I should know that he hasn't told me, he said that my recent cardiac marker results for systemic AL amyloidosis are on the rise, although within normal range. I am awaiting the repeat results now.
I have major decisions to make about my life (as we all do) which unfortunately has been plagued with chronic illness since I was a baby. I was driving the other day, the sun was shining, I felt pretty well, and I felt I could live forever, how could I have the diagnoses I have. There must be a mistake? I think when one feels like that one can get lulled into a false sense of security and make wrong decisions.
For me my biggest decision is should I retire, I have an extremely stressful job and feel I don't want any added stress on my life so I am seriously considering giving up my 27 year career. However, the decision I make now must be suitable for the immediate, the medium, and the longer term should things go well with me
Difficult times ... but I am sure all on here are having their fair share of difficult times as well
I feel once I have seen the professor there will be some clarity. I hope so anyway!!
Many thanks again, Kay
-
blessthischick - Name: Blessthischick
- Who do you know with myeloma?: Me (SMM)
- When were you/they diagnosed?: Oct 10th 2013
- Age at diagnosis: 46
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