Lab test showed a monocolonal gammopathy, so I was referred to an oncologist. He ordered a skelatal survey - normal. A bone marrow biopsy - 13% plasma cells, kappa light chain. IgA 1050, IgM 21. CBC all borderline low. Bone density shows osteopenia.
The doctor explained that I have smoldering myeloma. No treatment, follow-up in 3 months with CBC / immunoglobulin labs. If no change, he will see me every 6 months.
This does not necessarily go along with all I have read. I am terrified I will not make the right choices. I live in Ohio and know that there are myeloma specialists at Ohio State James Cancer Center. Not sure if I need a second opinion?
I feel paralyzed. Any suggestions would be so helpful. Hopeful,
Mary Q
Forums
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MQuarter - Name: MaryQ
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/2015
- Age at diagnosis: 58
Re: Newly diagnosed & afraid
Mary -
You've come to the right place
First, I think everyone on this forum would encourage you to seek out the advice of a myeloma specialist. I am only MGUS (monoclonal gammopathy of undetermined significance), but because myeloma is relatively "rare" and the emergence of new therapies based on new studies, it would behoove you and any of us on the MGUS / smoldering multiple myeloma / multiple myeloma spectrum to see a specialist. Others on this forum will probably have some excellent suggestions for specialists in your area (and I believe there are some really good ones).
Secondly, I think your right about having more frequent follow up. Smoldering multiple myeloma should be followed every few months, not every 6 months, to determine if it is stable. Even if it is, it's best to know when there are changes as soon as possible.
Just a question: What were your presenting symptoms that lead to this diagnosis?
Regardless, you are at a great place for solid information. If it's any consolation right now, there are people who remain stable as smoldering multiple myeloma for years. I do not know your case, but it is at least good to know that.
All the best and stay close to the Beacon!
You've come to the right place
First, I think everyone on this forum would encourage you to seek out the advice of a myeloma specialist. I am only MGUS (monoclonal gammopathy of undetermined significance), but because myeloma is relatively "rare" and the emergence of new therapies based on new studies, it would behoove you and any of us on the MGUS / smoldering multiple myeloma / multiple myeloma spectrum to see a specialist. Others on this forum will probably have some excellent suggestions for specialists in your area (and I believe there are some really good ones).
Secondly, I think your right about having more frequent follow up. Smoldering multiple myeloma should be followed every few months, not every 6 months, to determine if it is stable. Even if it is, it's best to know when there are changes as soon as possible.
Just a question: What were your presenting symptoms that lead to this diagnosis?
Regardless, you are at a great place for solid information. If it's any consolation right now, there are people who remain stable as smoldering multiple myeloma for years. I do not know your case, but it is at least good to know that.
All the best and stay close to the Beacon!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Newly diagnosed & afraid
I knew I forgot a few things:
What were the results of your serum protein electrophoresis (SPEP) and immunofixation results, and your serum free light chain results (kappa and lambda levels and kappa-lambda ratio)?
What were the results of your serum protein electrophoresis (SPEP) and immunofixation results, and your serum free light chain results (kappa and lambda levels and kappa-lambda ratio)?
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Newly diagnosed & afraid
Mary,
You've got some good suggestions from Toni so far. In addition to the James Cancer Center (which has some top multiple myeloma specialists) in Ohio, there is also the Cleveland Clinic (including Dr. Jason Valent, a Medical Advisor to the Beacon). A second opinion from a top notch multiple myeloma specialist is always a really good idea.
I'm smoldering and I get checked every 2-3 months, as Toni suggests. It's also more typical to routinely follow smoldering myeloma with a more complete set of labs, which include a serum protein electrophoresis (SPEP), immunofixation (IFE), serum free light chains (Freelite assay), quantitative immunoglobulins, CBC, and comprehensive metabolic panel tests. You don't say how advanced your osteopenia is, but that is something to definitely keep an eye on and to possibly discuss further with a multiple myeloma specialist.
Lastly, the new International Myeloma Working Group (IMWG) standard for imaging for newly diagnosed patients is either a PET/CT or whole-body MRI. These two imaging modalities tend to be better at catching bone issues than are skeletal surveys. See this article for further info:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
Best of luck to you and let us know if we can help in any way.
You've got some good suggestions from Toni so far. In addition to the James Cancer Center (which has some top multiple myeloma specialists) in Ohio, there is also the Cleveland Clinic (including Dr. Jason Valent, a Medical Advisor to the Beacon). A second opinion from a top notch multiple myeloma specialist is always a really good idea.
I'm smoldering and I get checked every 2-3 months, as Toni suggests. It's also more typical to routinely follow smoldering myeloma with a more complete set of labs, which include a serum protein electrophoresis (SPEP), immunofixation (IFE), serum free light chains (Freelite assay), quantitative immunoglobulins, CBC, and comprehensive metabolic panel tests. You don't say how advanced your osteopenia is, but that is something to definitely keep an eye on and to possibly discuss further with a multiple myeloma specialist.
Lastly, the new International Myeloma Working Group (IMWG) standard for imaging for newly diagnosed patients is either a PET/CT or whole-body MRI. These two imaging modalities tend to be better at catching bone issues than are skeletal surveys. See this article for further info:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.
Best of luck to you and let us know if we can help in any way.
Last edited by Multibilly on Sat Apr 25, 2015 8:46 am, edited 3 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 & afraid
Hi Mary,
I was just diagnosed with smoldering myeloma too. I also have the IgA kind. I live in Connecticut and I am being treated at Smilow. My doctor is having me come in every month because IgA tends to be more aggressive than other types. She wants to establish a baseline. She has me going in tomorrow for a spinal MRI. I think a specialist would be the best avenue. Good luck.
Sincerely,
Colleen
I was just diagnosed with smoldering myeloma too. I also have the IgA kind. I live in Connecticut and I am being treated at Smilow. My doctor is having me come in every month because IgA tends to be more aggressive than other types. She wants to establish a baseline. She has me going in tomorrow for a spinal MRI. I think a specialist would be the best avenue. Good luck.
Sincerely,
Colleen
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ColleenM - Name: Colleen Mabasa
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 41
Re: Newly diagnosed & afraid
Thank you all. I live 30 minutes from the Cleveland Clinic, will call Monday. I have reviewed so many numbers that I find myself overwhelmed. It is very comforting to talk to those that understand.
Love & Blessings
Love & Blessings
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MQuarter - Name: MaryQ
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/2015
- Age at diagnosis: 58
Re: Newly diagnosed & afraid
Mary,
There ARE a lot of numbers and new concepts to get one's head around when first diagnosed and it can be overwhelming at first (I definitely remember that feeling when first diagnosed with smoldering multiple myeloma about 2 1/2 years ago). But, trust me, you will start to get comfortable with the language of multiple myeloma and the key numbers you need to follow in a few months.
There's a good chance that you are smoldering and that you may never need treatment. Let us know how things turn out at the Cleveland Clinic. Good luck.
There ARE a lot of numbers and new concepts to get one's head around when first diagnosed and it can be overwhelming at first (I definitely remember that feeling when first diagnosed with smoldering multiple myeloma about 2 1/2 years ago). But, trust me, you will start to get comfortable with the language of multiple myeloma and the key numbers you need to follow in a few months.
There's a good chance that you are smoldering and that you may never need treatment. Let us know how things turn out at the Cleveland Clinic. Good luck.
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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 & afraid
Mary
I won't be adding any technical information here, but there is one thing I believe is worth hanging onto: One can smolder for years and years and may never become symptomatic.
It is something all we smolderers hope for here
Best of luck and wish you well,
Maro
I won't be adding any technical information here, but there is one thing I believe is worth hanging onto: One can smolder for years and years and may never become symptomatic.
It is something all we smolderers hope for here
Best of luck and wish you well,
Maro
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: Newly diagnosed & afraid
Also, I think it's helpful to know that it IS overwhelming at first (and even not-at-first), and it IS a big deal. So feeling afraid and overwhelmed it totally normal. In fact, it's expected! You are not alone!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Newly diagnosed & afraid
I saw Dr Jason Valent at the Cleveland Clinic today. He explained smoldering myeloma to us, answered all of my question and took away most of our fear. I will follow up in 3 months...for now I am going to live my life to the fullest...thank you for the support and recommendation. Love & blessings
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MQuarter - Name: MaryQ
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/2015
- Age at diagnosis: 58
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