Welcome to this week's Beacon Weekly Polls. This week’s questions are about how long it's been since your diagnosis. This poll is specifically for patients with smoldering myeloma.
Separate polls are being run this week for patients with monoclonal gammopathy of undetermined significance (MGUS) and multiple myeloma (see the links below in this posting).
A few clarifications:
First, as indicated in the question, you should only respond if you currently have smoldering myeloma, and you have never been diagnosed with -- or treated for -- active (symptomatic) multiple myeloma.
Smoldering myeloma, also called inactive or asymptomatic myeloma, is an early stage of myeloma in which the patient does not yet show any of the common myeloma-related symptoms, such as elevated calcium levels in the blood, anemia, bone disease, or kidney damage.
Second, if you are a caregiver or spouse of of someone with smoldering myeloma, feel free to answer on their behalf.
Once you have answered the question above, add whatever comments you feel might be relevant in the discussion below.
As mentioned above, we are also currently running polls for MGUS and active multiple myeloma patients. If you currently have MGUS or active myeloma, please vote in the appropriate poll. And, of course, feel free to check out the results of all of the polls:
Active multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-myeloma-diagnosis-2014-t3357.html
MGUS:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-mgus-diagnosis-2014-t3355.html
We previously ran each of these polls before, but are running them again so that Beacon readers have access to the latest information and can compare it to the previous data.
Previous polls (January 2013):
Active multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-myeloma-diagnosis-2013-t1607.html
Smoldering multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-smoldering-diagnosis-2013-t1606.html
MGUS:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-mgus-diagnosis-2013-t1605.html
Forums
8 posts
• Page 1 of 1
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
Am I still considered "smoldering" if I do not have any CRAB symptoms but my light chains are increasing? Is "evolving" in the same category as smoldering? I will begin treatment within a few months since I am considered "ultra high-risk" smoldering. So is there such a thing as smoldering, but being treated? Crazy semantics!
-
gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
Thanks for your question, gardengirl.
We understand that you're in somewhat of a gray area. However, using current definitions, you still are considered to have smoldering myeloma. Thus, this would be the poll you should answer.
We understand that you're in somewhat of a gray area. However, using current definitions, you still are considered to have smoldering myeloma. Thus, this would be the poll you should answer.
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
I an in the uk and was diagnosed nearly eleven years ago. I have not received any treatment but have bloods done every three months to check paraprotein level which remains at around 27.
-
Louise m
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
I was first diagnosed as smoldering in June 2011. I have recently started treatment as my light chains are rising and peripheral neuropathy has been severe BUT I am still technically smoldering as I have no CRAB symptoms. Pps 29, kappa light chains 580, kappa lambda ratio 100+. I am taking dexamethasone and cyclophosphamide [Cytoxan] with a view to adding lenalidomide [Revlimid].
Which category do I fall in
Which category do I fall in
-
janee
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
Thanks for your question, janee. You're also in a bit of a gray area. However, since you're still technically smoldering, this would be the poll question you would answer.
Good luck with your treatment!
Good luck with your treatment!
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
In August 2013, my initial SPEP showed an IgA lambda, IgG kappa biclonal gammopathy, with a paraprotein level of 0.4 G/DL (5% of total protein). I was diagnosed with smoldering multiple myeloma in October 2013 on the basis of a BMB that showed a plasma cell count of 5 to 10%. There were no genetic abnormalities identified on the FISH and the flow cytometry showed 1% myeloma cells (CD 38+) with lambda prodominance (58% lambda and 42% kappa).
Since the fall, my paraprotein level has dropped a little to 0.34 G/DL (still 5% of total protein). However, my lambda free chain level that has risen from 81.5 mg/L to 86 mg/L, and the lambda/kappa ratio has dropped from 0.13 to 0.09. I am totally asymptomatic; the skeletal scan was clear and urine for BJP was negative.
Is the smoldering multiple myeloma diagnosis correct, or could this be classified as a high risk MGUS? My prognosis over the next 2 to 5 years is quite important to me. I am 63 years old.
Since the fall, my paraprotein level has dropped a little to 0.34 G/DL (still 5% of total protein). However, my lambda free chain level that has risen from 81.5 mg/L to 86 mg/L, and the lambda/kappa ratio has dropped from 0.13 to 0.09. I am totally asymptomatic; the skeletal scan was clear and urine for BJP was negative.
Is the smoldering multiple myeloma diagnosis correct, or could this be classified as a high risk MGUS? My prognosis over the next 2 to 5 years is quite important to me. I am 63 years old.
-
ciro - Who do you know with myeloma?: me
- When were you/they diagnosed?: MGUS 2013, SMM Feb 2016
- Age at diagnosis: 62
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
Hi ciro13,
A good quick summary of the criteria for distinguishing between MGUS, smoldering myeloma, and multiple myeloma is the "Diagnostic Criteria" section of the Wikipedia article on multiple myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
(Note that the article as it currently stands uses paraprotein / M-spike levels that are measured in g/L. To convert g/L to g/dL, just divide the g/L numbers by 10.)
The key criteria for distinguishing between MGUS and smoldering myeloma are the bone marrow plasma cell percentage and the M-spike level. Free light chain levels and ratios are not currently part of the diagnostic criteria for distinguishing between MGUS and smoldering myeloma.
Your M-spike is well below the cutoff of 3 g/dL between MGUS and smoldering. Your bone marrow plasma cell percentage is 5 to 10 percent. The cutoff between MGUS and smoldering is 10 percent.
Thus, to me, it seems that you're more on the MGUS side of the MGUS / smoldering cutoff.
This recent ASH education book article may give you some additional insights:
"Differential diagnosis of monoclonal gammopathy of undetermined significance", http://asheducationbook.hematologylibrary.org/content/2012/1/595.full
If it does, I would be curious to know what you learn.
A good quick summary of the criteria for distinguishing between MGUS, smoldering myeloma, and multiple myeloma is the "Diagnostic Criteria" section of the Wikipedia article on multiple myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
(Note that the article as it currently stands uses paraprotein / M-spike levels that are measured in g/L. To convert g/L to g/dL, just divide the g/L numbers by 10.)
The key criteria for distinguishing between MGUS and smoldering myeloma are the bone marrow plasma cell percentage and the M-spike level. Free light chain levels and ratios are not currently part of the diagnostic criteria for distinguishing between MGUS and smoldering myeloma.
Your M-spike is well below the cutoff of 3 g/dL between MGUS and smoldering. Your bone marrow plasma cell percentage is 5 to 10 percent. The cutoff between MGUS and smoldering is 10 percent.
Thus, to me, it seems that you're more on the MGUS side of the MGUS / smoldering cutoff.
This recent ASH education book article may give you some additional insights:
"Differential diagnosis of monoclonal gammopathy of undetermined significance", http://asheducationbook.hematologylibrary.org/content/2012/1/595.full
If it does, I would be curious to know what you learn.
8 posts
• Page 1 of 1