Hello Everyone,
After 6 months of active surveillance, my doctor says it is time for me to start treatment.
My diagnosis up until now has been smoldering multiple myeloma.
However, My IgA is trending upward:
August 1154
January 1575
My IgG is below normal, and my IgM absent. I'm still borderline anemic, but calcium and creatinine are both normal.
Is it common to start treating smoldering multiple myeloma without any real "CRAB" symptoms?
Dennis
Forums
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Treatment of smoldering myeloma without CRAB symptoms
Hi Dennis,
What are your serum free light chain numbers doing? Are you getting infections or becoming sick frequently (I ask since your IgG and IgM are both suppressed)? Did your doctor give you a reason for wanting to start treatment?
What are your serum free light chain numbers doing? Are you getting infections or becoming sick frequently (I ask since your IgG and IgM are both suppressed)? Did your doctor give you a reason for wanting to start treatment?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Treatment of smoldering myeloma without CRAB symptoms
Hi Dennis,
What other tests has your doctor ran? Have you had an MRI or bone scan or a bone marrow biopsy, a 24-hour urine? Those are pretty standard tests run on people with suspected multiple myeloma and to check degree of the disease and/or progression.
Good luck to you
What other tests has your doctor ran? Have you had an MRI or bone scan or a bone marrow biopsy, a 24-hour urine? Those are pretty standard tests run on people with suspected multiple myeloma and to check degree of the disease and/or progression.
Good luck to you
Re: Treatment of smoldering myeloma without CRAB symptoms
mrswrench,
Yes, a bone marrow biopsy last August showed 7% plasma cells; skeletal survey, CT of the chest, abdomen and pelvis all negative. MRI of the spine showed degenerative changes in the lumbar region. Fat pad biopsy was negative for amyloidosis. I have not had a 24-hour urine test.
Yes, a bone marrow biopsy last August showed 7% plasma cells; skeletal survey, CT of the chest, abdomen and pelvis all negative. MRI of the spine showed degenerative changes in the lumbar region. Fat pad biopsy was negative for amyloidosis. I have not had a 24-hour urine test.
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Treatment of smoldering myeloma without CRAB symptoms
Hi Multibily,
Not sure what my light chains are currently. Last check in September I believe the kappa-lambda ratio was 36.2.
I don't venture out much in winter: wheelchairs + snow don't mix. This also helps to avoid flu / germ exposure. The fatigue, nerve pain, and muscle aches are worse this month. New bone pain in sternum and one rib this week.
Appointment last week, Doctor said treatment should start because "numbers are steadily creeping up" . He said my existing neuropathy is worrisome because treatment side effects may make it worse. He has ruled out POEMS disease. Next appointment on the 26th we will review latest blood work, discuss treatment, etc.
Is it unusual to start treatment so soon?
Thank you so much for your response. This site is a blessing.
Not sure what my light chains are currently. Last check in September I believe the kappa-lambda ratio was 36.2.
I don't venture out much in winter: wheelchairs + snow don't mix. This also helps to avoid flu / germ exposure. The fatigue, nerve pain, and muscle aches are worse this month. New bone pain in sternum and one rib this week.
Appointment last week, Doctor said treatment should start because "numbers are steadily creeping up" . He said my existing neuropathy is worrisome because treatment side effects may make it worse. He has ruled out POEMS disease. Next appointment on the 26th we will review latest blood work, discuss treatment, etc.
Is it unusual to start treatment so soon?
Thank you so much for your response. This site is a blessing.
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Treatment of smoldering myeloma without CRAB symptoms
I would echo Multibilly's interest in what your serum free light chain levels and ratio. If those numbers are not far off from normal, and with your imaging results and a bone marrow plasma cell percentage of 7 percent, I have to wonder about the rush to start treatment.
I see in an older post of yours that your kappa-lambda ratio was 35 at one time. If that has continued to climb, and is getting close to 100, that would explain why your doctors are considering starting treatment – particularly if your elevated free light chain level is getting really high, increasing the possibility of kidney damage.
What has been happening with your M-spike? Has it been steadily climbing?
I see in an older post of yours that your kappa-lambda ratio was 35 at one time. If that has continued to climb, and is getting close to 100, that would explain why your doctors are considering starting treatment – particularly if your elevated free light chain level is getting really high, increasing the possibility of kidney damage.
What has been happening with your M-spike? Has it been steadily climbing?
Re: Treatment of smoldering myeloma without CRAB symptoms
Hi TerryH,
I don't know what my M-spike is doing currently, but I will definitely ask at next week's appointment! Last check was in September, there were two bands present, equaling 1.1 g/dL (11 g/l). I think the doctor must have only run a quantitative immunoglobulin test last week? Only shows IgA, IgG and IgM levels in my results.
I am going to definitely question doc on M-spike and free light chain level at next appointment.
Thank you!
I don't know what my M-spike is doing currently, but I will definitely ask at next week's appointment! Last check was in September, there were two bands present, equaling 1.1 g/dL (11 g/l). I think the doctor must have only run a quantitative immunoglobulin test last week? Only shows IgA, IgG and IgM levels in my results.
I am going to definitely question doc on M-spike and free light chain level at next appointment.
Thank you!
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
Re: Treatment of smoldering myeloma without CRAB symptoms
Hi Dennis,
The reason your doctors may be focusing on the trend in your IgA is because the measurement of a patient's M-spike tends to be less accurate in IgA multiple myeloma and MGUS than in IgG multiple myeloma. Even if that's the case, it still would be useful to know if your M-spike has been trending up, even if the M-spike numbers can't be totally relied upon.
Good luck!
The reason your doctors may be focusing on the trend in your IgA is because the measurement of a patient's M-spike tends to be less accurate in IgA multiple myeloma and MGUS than in IgG multiple myeloma. Even if that's the case, it still would be useful to know if your M-spike has been trending up, even if the M-spike numbers can't be totally relied upon.
Good luck!
Re: Treatment of smoldering myeloma without CRAB symptoms
Hello,
I was a smoldering patient since 2013 with IVIG-dependent immunoparesis. I just started treatment without CRAB symptoms due to spinal compression and a pathological foot fracture, which is likely the result of diffuse osteopenia. Not all myeloma patients have bone lesions but instead a worsening of the bone integrity throughout.
My doctor considered the pathological fracture a "myeloma defining event" (MDE), but my M-spike also increased from a stable 1.1 to 1.6 g/dL (11 to 16 g/l).
So far I have no side effects from treatment because I'm on a low-dose regimen. My quality of life was good before, but I was physically limited due to herniated discs, bulging discs, and spinal cord compression, so I'm hoping I can manage these issues effectively while I'm on treatment and come out the other side being active again so I can better fight this disease.
It is unclear from your post if your neuropathy is myeloma related, but it's worth mentioning I also have neuropathy as a result of the multiple myeloma. It isn't that common, but it can happen. If it is myeloma related, you may experience great relief if treated. I was also neutropenic before treatment, which is an uncommon occurrence at diagnosis, and this fact coupled with immunoparesis is why I'm on low-dose therapy with no plans for a stem cell transplant at this time.
Best,
J
I was a smoldering patient since 2013 with IVIG-dependent immunoparesis. I just started treatment without CRAB symptoms due to spinal compression and a pathological foot fracture, which is likely the result of diffuse osteopenia. Not all myeloma patients have bone lesions but instead a worsening of the bone integrity throughout.
My doctor considered the pathological fracture a "myeloma defining event" (MDE), but my M-spike also increased from a stable 1.1 to 1.6 g/dL (11 to 16 g/l).
So far I have no side effects from treatment because I'm on a low-dose regimen. My quality of life was good before, but I was physically limited due to herniated discs, bulging discs, and spinal cord compression, so I'm hoping I can manage these issues effectively while I'm on treatment and come out the other side being active again so I can better fight this disease.
It is unclear from your post if your neuropathy is myeloma related, but it's worth mentioning I also have neuropathy as a result of the multiple myeloma. It isn't that common, but it can happen. If it is myeloma related, you may experience great relief if treated. I was also neutropenic before treatment, which is an uncommon occurrence at diagnosis, and this fact coupled with immunoparesis is why I'm on low-dose therapy with no plans for a stem cell transplant at this time.
Best,
J
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Treatment of smoldering myeloma without CRAB symptoms
Hello J,
Thank you for your input. In 2012 I was diagnosed with a rare chronic form of Guillain-Barré syndrome called CIDP (chronic inflammatory demyelinating polyneuropathy).
My neuropathy is not from the multiple myeloma. The pain is quite severe and has caused permanent nerve and muscle damage, thus the wheelchair. My doctor has expressed his concern for starting treatment due to my existing neuropathy coupled with any additional side effects from chemotherapy. Maybe a low-dose regimen as well to start?
Best wishes to you.
Dennis
Thank you for your input. In 2012 I was diagnosed with a rare chronic form of Guillain-Barré syndrome called CIDP (chronic inflammatory demyelinating polyneuropathy).
My neuropathy is not from the multiple myeloma. The pain is quite severe and has caused permanent nerve and muscle damage, thus the wheelchair. My doctor has expressed his concern for starting treatment due to my existing neuropathy coupled with any additional side effects from chemotherapy. Maybe a low-dose regimen as well to start?
Best wishes to you.
Dennis
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Dennis - Name: Dennis
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 64
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