Lizzie has said her doctor has classified her as having myeloma, not smoldering myeloma. As Multibilly said 60% monoclonal plasma cell is on the high side even among those with myeloma. I had 30% and was stage III. There are less than 5% total plasma cells in normal bone marrow, over half of Lizzie bone marrow is cancerous, nothing smoldering about that. I cut and past the following bellow from Cancer.org on myeloma staging. Lizzie has a large number of myeloma cells and just one of the following to be Stage III. I think she likely has the last. This criteria could be dated and there are other similar staging criteria for myeloma.
Stage III
A large number of myeloma cells are found. One or more of the following features must be present:
• Low hemoglobin level (below 8.5 g/dL)
• High blood calcium level (above 12 mg/dL)
• 3 or more areas of bone destroyed by the cancer
• Large amount of monoclonal immunoglobulin in blood or urine
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Re: Newly diagnosed, need treatment ... success stories?!
Hey Lizzie,
I do want to add, "don't freak out" from this discussion regarding your plasma cell %. You are not experiencing CRAB symptoms, so your key organs (kidney, bones, etc) aren't currently under attack...as is the case with many folks who visit this forum for the first time. Take a deep breath, take the time to do your homework and talk to multiple specialists. Folks on this forum will be glad to help with your questions.
I do want to add, "don't freak out" from this discussion regarding your plasma cell %. You are not experiencing CRAB symptoms, so your key organs (kidney, bones, etc) aren't currently under attack...as is the case with many folks who visit this forum for the first time. Take a deep breath, take the time to do your homework and talk to multiple specialists. Folks on this forum will be glad to help with your questions.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, need treatment ... success stories?!
This is where I get very confused as well. There is data that days Unwould be considered high risk SMM bc of the absence of CRAB symptoms. Additionally I've read that B2 and aluminum levels are used to determine staging and both of mine are well with normal range. I have significant protienuria, but my creatinine and GFR are all normal. It would seem that the high infiltration of monoclonal cells (60%) would mean I'm super symptomatic (I think) but I'm not.... All CRAB ranges are very normal. The only weird symptoms I have (which drove me to the rheumatologist in first place), are some weakness in my legs and arms (which usually presents with exertion and simply burns for a little while then goes away) and carpal tunnel. Other than that, I feel fine. It's all very strange.
Re: Newly diagnosed, need treatment ... success stories?!
I meant albumin levels not aluminum!! Got to love auto correct 
Re: Newly diagnosed, need treatment ... success stories?!
Hey LIzzie,
To be clear, you had a full-body skeletal xray or MRI or PET/CT to rule out any bone lesions, right?
To be clear, you had a full-body skeletal xray or MRI or PET/CT to rule out any bone lesions, right?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, need treatment ... success stories?!
Lizzie,
These articles may be useful to you. Note Dr. Landgren's (an amazing and caring doctor at the NIH) comments as well.
https://myelomabeacon.org/news/2012/09/07/higher-progression-risk-for-smoldering-myeloma-patients-with-high-percentage-of-plasma-cells-in-bone-marrow/
https://myelomabeacon.org/forum/would-you-consider-treatment-for-high-risk-smoldering-multiple-myeloma-t1711.html
These articles may be useful to you. Note Dr. Landgren's (an amazing and caring doctor at the NIH) comments as well.
https://myelomabeacon.org/news/2012/09/07/higher-progression-risk-for-smoldering-myeloma-patients-with-high-percentage-of-plasma-cells-in-bone-marrow/
https://myelomabeacon.org/forum/would-you-consider-treatment-for-high-risk-smoldering-multiple-myeloma-t1711.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, need treatment ... success stories?!
I had a full body X-ray .... Normal. I didn't have an MRI or CT scan though.
Re: Newly diagnosed, need treatment ... success stories?!
Regarding "izziec: I had a full body X-ray .... Normal. I didn't have an MRI or CT scan though".
Great, just wanted to be sure you had been scanned.
It's not immediately pressing, but it may be good to consider/discuss a PET/CT or whole body MRI as you engage with your next specialist...and maybe consider a DEXA scan to evaluate your bone density (I'm smoldering and I had both a PET/CT and DEXA after my initial Xray when I first got diagnosed back in 2012).
X-rays for initial multiple myeloma diagnosis are by no means infallible. See p 21 on this presentation by Dr. Landgren on treating high-risk smoldering patients. Note the comments regarding the number of allegedly smoldering patients that signed up for the study, but ended up not being smoldering after all.
http://static9.light-kr.com/documents/IMW2013/Landgren%20-%20CRd%20Smoldering%20Myeloma.pdf
"During screening for the trial, many SMM patients had bone lesions detectable by CT or PET
CT; these patients were ineligible for the trial (due to multiple myeloma)
Among SMM without bone lesions , ~30% had increased PET uptake in the bone marrow"
Great, just wanted to be sure you had been scanned.
It's not immediately pressing, but it may be good to consider/discuss a PET/CT or whole body MRI as you engage with your next specialist...and maybe consider a DEXA scan to evaluate your bone density (I'm smoldering and I had both a PET/CT and DEXA after my initial Xray when I first got diagnosed back in 2012).
X-rays for initial multiple myeloma diagnosis are by no means infallible. See p 21 on this presentation by Dr. Landgren on treating high-risk smoldering patients. Note the comments regarding the number of allegedly smoldering patients that signed up for the study, but ended up not being smoldering after all.
http://static9.light-kr.com/documents/IMW2013/Landgren%20-%20CRd%20Smoldering%20Myeloma.pdf
"During screening for the trial, many SMM patients had bone lesions detectable by CT or PET
CT; these patients were ineligible for the trial (due to multiple myeloma)
Among SMM without bone lesions , ~30% had increased PET uptake in the bone marrow"
Last edited by Multibilly on Wed Jan 22, 2014 7:06 pm, edited 2 times in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed, need treatment ... success stories?!
Hi Lizzie,
I am smoldering and under "watchful" waiting. I was labeled High Risk (HR-SMM) based upon my BMB results (flow cytometry) , but not Ultra High Risk which is the new term I heard "coined" at the most recent ASH meeting last month. ( According to the recent ASH meeting presentations Ultra HR-SMM is >60% plasma cells, and/or Free Light Chain involved/uninvolved Ratio >100 and/or > 1 lesion on MRI. )
The multiple myeloma specialist community presenting at ASH feel the latter term should be redefined as "Early multiple myeloma" and feel it should be treatable outside of clinical trials (with the thought to potentially avert CRAB damage) just as those who are newly diagnosed multiple myeloma are treated (those with overt CRAB symptoms where the multiple myeloma is already causing the projected damage).
The former - HR-SMM - could be treated if one chooses, but only in the clinical trial setting. The caveat is getting the precise label in the HR-SMM case, some of the criteria is still a bit arbitrary, under review/study, and evolving as new biomarkers are being studied. The final "label" is low risk SMM and the recommendation remains careful and frequent monitoring.
Two Progression Risk models stage the criteria for the HR-SMM and low risk SMM classifications - 1 by the Mayo Clinic group and 1 by the Spanish PETHEMA group - a study by the NIH group (Dr. Landgren, et.al) comparing both models resulted in discordance that needs to be sorted out. You will find this study as well as the risk progression models within the articles on this site (working from a tablet right now, and can't seem to provide any links as Multibilly and others have done)
I traveled and consulted with an multiple myeloma specialist at a top center to confirm my local hem/oncs Dx and to insure I had a complete multiple myeloma workup to rule out CRAB, including advanced imaging diagnostics (full spine and femur MRI's and full body PET/CT w/ FDG). I did present with what is believed to be non-age related intermediate (hips) /advanced (spine) osteopenia and have received Zometa infusions (under Osteoporosis treatment protocol which determined infusion frequency) to proactively treat/protect and get me in a better place, bone wise. My recent DEXA report showed improvement. I am monitored every 3 months w/ labs and additional imaging diagnostics, "as needed" and continue to forward my results to the multiple myeloma specialist for "record/review".
I hope my information is accurate (perhaps the Beacon staff can double check my info since I could not link to the articles). I don't have anything else to add, as you have already been provided with the most outstanding info and advice from those who already responded to you. The folks who responded to you are incredibly knowledgeable and AMAZING ! You learn a ton from them and the articles/resources posted on this site. All of the very best to you.
Dana
I am smoldering and under "watchful" waiting. I was labeled High Risk (HR-SMM) based upon my BMB results (flow cytometry) , but not Ultra High Risk which is the new term I heard "coined" at the most recent ASH meeting last month. ( According to the recent ASH meeting presentations Ultra HR-SMM is >60% plasma cells, and/or Free Light Chain involved/uninvolved Ratio >100 and/or > 1 lesion on MRI. )
The multiple myeloma specialist community presenting at ASH feel the latter term should be redefined as "Early multiple myeloma" and feel it should be treatable outside of clinical trials (with the thought to potentially avert CRAB damage) just as those who are newly diagnosed multiple myeloma are treated (those with overt CRAB symptoms where the multiple myeloma is already causing the projected damage).
The former - HR-SMM - could be treated if one chooses, but only in the clinical trial setting. The caveat is getting the precise label in the HR-SMM case, some of the criteria is still a bit arbitrary, under review/study, and evolving as new biomarkers are being studied. The final "label" is low risk SMM and the recommendation remains careful and frequent monitoring.
Two Progression Risk models stage the criteria for the HR-SMM and low risk SMM classifications - 1 by the Mayo Clinic group and 1 by the Spanish PETHEMA group - a study by the NIH group (Dr. Landgren, et.al) comparing both models resulted in discordance that needs to be sorted out. You will find this study as well as the risk progression models within the articles on this site (working from a tablet right now, and can't seem to provide any links as Multibilly and others have done)
I traveled and consulted with an multiple myeloma specialist at a top center to confirm my local hem/oncs Dx and to insure I had a complete multiple myeloma workup to rule out CRAB, including advanced imaging diagnostics (full spine and femur MRI's and full body PET/CT w/ FDG). I did present with what is believed to be non-age related intermediate (hips) /advanced (spine) osteopenia and have received Zometa infusions (under Osteoporosis treatment protocol which determined infusion frequency) to proactively treat/protect and get me in a better place, bone wise. My recent DEXA report showed improvement. I am monitored every 3 months w/ labs and additional imaging diagnostics, "as needed" and continue to forward my results to the multiple myeloma specialist for "record/review".
I hope my information is accurate (perhaps the Beacon staff can double check my info since I could not link to the articles). I don't have anything else to add, as you have already been provided with the most outstanding info and advice from those who already responded to you. The folks who responded to you are incredibly knowledgeable and AMAZING ! You learn a ton from them and the articles/resources posted on this site. All of the very best to you.
Dana
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: Newly diagnosed, need treatment ... success stories?!
The approach that Dana describes for defining "ultra high-risk" smoldering myeloma patients -- or "early multiple myeloma" patients -- is one that was recently proposed by the Mayo Clinic in the following paper published in December:
http://bloodjournal.hematologylibrary.org/content/122/26/4172.full.pdf (full text)
The specific algorithm, based on bone marrow plasma cell percentages and the other factors Dana mentioned, is summarized in this diagram:
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.expansion.html
The paper as a whole is a very detailed look at how the definition of smoldering myeloma has evolved and the different approaches that have been investigated for predicting whether or not a smoldering patient will progress to active myeloma.
It also provides information on studies that have been carried out investigating whether early treatment of smoldering myeloma is beneficial or not.
Please note that what are described as "consensus" recommendations in this paper are based on a consensus of opinion among the Mayo Clinic's specialists. These are not consensus recommendations or guidelines from, for example, the International Myeloma Working Group (IMWG), which includes myeloma specialists from around the world, or the National Comprehensive Cancer Network (NCCN), which sets guidelines that influence insurance reimbursement decisions in the U.S.
http://bloodjournal.hematologylibrary.org/content/122/26/4172.full.pdf (full text)
The specific algorithm, based on bone marrow plasma cell percentages and the other factors Dana mentioned, is summarized in this diagram:
http://bloodjournal.hematologylibrary.org/content/122/26/4172/F4.expansion.html
The paper as a whole is a very detailed look at how the definition of smoldering myeloma has evolved and the different approaches that have been investigated for predicting whether or not a smoldering patient will progress to active myeloma.
It also provides information on studies that have been carried out investigating whether early treatment of smoldering myeloma is beneficial or not.
Please note that what are described as "consensus" recommendations in this paper are based on a consensus of opinion among the Mayo Clinic's specialists. These are not consensus recommendations or guidelines from, for example, the International Myeloma Working Group (IMWG), which includes myeloma specialists from around the world, or the National Comprehensive Cancer Network (NCCN), which sets guidelines that influence insurance reimbursement decisions in the U.S.
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