Hi All! I am still trying to get my ducks in a row before I start treatment.
I'm wondering if there are any guidelines for doctors regarding light chain and involved immunoglobin levels to determine if treatment should be started, or if it can wait. This is assuming no CRAB symptoms (except for one small pesky plasmacytoma that is unchanged over 5 months) but evolving numbers.
For example, at what level do light chains need to be to cause kidney damage; what levels for involved immunoglobins to cause bone damage? I know I'm delaying the inevitable, but if I can just get through the summer, I will then be ready ... maybe.
Forums
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Magic numbers; when to start treatment?
Great question.
I've had different opinions, so there may be no specific guidelines. It seems that if there is a worsening trend in any of the numbers (multiple myeloma markers or CRAB), or when FLC go above 1000, then that may be time to start treatment.
Am also wondering if there is ongoing renal / bone damage even at our smoldering levels, and if the damage is reversible with earlier treatment.
I've had different opinions, so there may be no specific guidelines. It seems that if there is a worsening trend in any of the numbers (multiple myeloma markers or CRAB), or when FLC go above 1000, then that may be time to start treatment.
Am also wondering if there is ongoing renal / bone damage even at our smoldering levels, and if the damage is reversible with earlier treatment.
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Blee - Name: Blee
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 58
Re: Magic numbers; when to start treatment?
Hello,
Even though the NCCN guidelines have changed regarding the risk factors for SMM, I believe the standard treatment has not changed and that the only option SMM patients have is a clinical trial. The requirements for the trials vary, but one commonality is the irregular FLC ratio. Until the risk stratification officially changes, looking at immunoparesis, osteopenia, etc., FLC ratio remains the dictating factor.
That being said, I'm not sure what a single plasmacytoma adds to the qualifying symptoms and the likelihood that treatment is imminent. Solitary plasmacytomas are usually treated with radiation and not chemo.
I personally am in no hurry for treatment, but I guess it depends on all of your stats, your doctors assessment of your risks, and your insurance companies willingness to pay if it isn't standard care according to the NCCN.
Best JBH
Even though the NCCN guidelines have changed regarding the risk factors for SMM, I believe the standard treatment has not changed and that the only option SMM patients have is a clinical trial. The requirements for the trials vary, but one commonality is the irregular FLC ratio. Until the risk stratification officially changes, looking at immunoparesis, osteopenia, etc., FLC ratio remains the dictating factor.
That being said, I'm not sure what a single plasmacytoma adds to the qualifying symptoms and the likelihood that treatment is imminent. Solitary plasmacytomas are usually treated with radiation and not chemo.
I personally am in no hurry for treatment, but I guess it depends on all of your stats, your doctors assessment of your risks, and your insurance companies willingness to pay if it isn't standard care according to the NCCN.
Best JBH
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jbh
Re: Magic numbers; when to start treatment?
Since JBH mentioned the NCCN guidelines for SMM, here are the latest updates on that topic.
http://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=250
Note that they also now acknowledge what I've been saying ever since I came across Dr. Landgren's recent study that showed that 30% of patients he was screening for SMM ended up not being SMM after all, but were instead symptomatic. This was a result of conducting PET/CTs on the patients instead of using an X-ray.
From the above NCCN link:
...It is also increasingly recognized, that the classical definition of smoldering myeloma using certain tests such as plain x-rays is outdated. Efforts to modify these criteria and reclassify some patients previously classified as 'asymptomatic' to having 'active disease' are underway."
http://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=250
Note that they also now acknowledge what I've been saying ever since I came across Dr. Landgren's recent study that showed that 30% of patients he was screening for SMM ended up not being SMM after all, but were instead symptomatic. This was a result of conducting PET/CTs on the patients instead of using an X-ray.
From the above NCCN link:
...It is also increasingly recognized, that the classical definition of smoldering myeloma using certain tests such as plain x-rays is outdated. Efforts to modify these criteria and reclassify some patients previously classified as 'asymptomatic' to having 'active disease' are underway."
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Magic numbers; when to start treatment?
The Mayo Clinic just published their MSMART guidelines for newly diagnosed multiple myeloma patients.
The MSMART guidelines for smoldering myeloma should be following soon.
Really interested to see what Mayo's recommendations will be. Would imagine the IMWG SMM guidelines will be published this year as well..
Best regards,
Dana H
The MSMART guidelines for smoldering myeloma should be following soon.
Really interested to see what Mayo's recommendations will be. Would imagine the IMWG SMM guidelines will be published this year as well..
Best regards,
Dana H
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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: Magic numbers; when to start treatment?
My doctor just emailed me today and he said he thinks insurance will cover treatment for smoldering myeloma. He is going to have his office staff look into it. (The Spanish study really makes for a good argument to treat early.)
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Magic numbers; when to start treatment?
Hi gardengirl,
I'm not sure where you are located, but are their any smoldering myeloma clinical trials near you? What is your doctor recommending for treatment? Are you seeing a multiple myeloma specialist?
Elizabeth
I'm not sure where you are located, but are their any smoldering myeloma clinical trials near you? What is your doctor recommending for treatment? Are you seeing a multiple myeloma specialist?
Elizabeth
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: Magic numbers; when to start treatment?
Hi Elizabeth!
There are no clinical trials near me at this time. I have seen two myeloma specialists that are corresponding with my local hematologist. They are recommending that I start with CyBorD soon. I am meeting with my local doctor next week to discuss this further. My big question is why not lenalidomide [Revlimid] plus dexamethasone?
There are no clinical trials near me at this time. I have seen two myeloma specialists that are corresponding with my local hematologist. They are recommending that I start with CyBorD soon. I am meeting with my local doctor next week to discuss this further. My big question is why not lenalidomide [Revlimid] plus dexamethasone?
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Magic numbers; when to start treatment?
From what I can see in the new Mayo guidelines, certain chromosomal abnormalities respond better to initial treatment with CyBorD. Have you had a FISH study to identify any chromosomal abnormalities?
See slides 5 and 6 here--
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Kathy
See slides 5 and 6 here--
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
Kathy
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koontzkg - Name: Kathy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2/2013
- Age at diagnosis: 51
Re: Magic numbers; when to start treatment?
Kathy, Fortunately, at this time, I do not have any chromosomal abnormalities! But thanks to your video posting, it's interesting to learn that there is now a Ultra HRSMM category ... that's where I am.
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
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