I went to my doctor on April 28, 2016 to get blood work done because I have been sick since the beginning of January this year. I just can't shake this stuff. My doctors' nurse called to let me know that my blood work came back as MGUS, and she told me that I had an appointment with a hematologist on May 3, 2016. He did a lot of blood work on me and I go back in 2 weeks to get those results.
I am 46 years old. Is this young for this diagnosis?
My symptoms: VERY fatigued all the time, feel like I have the flu, run a low grade fever 99-100 F all the time, night sweats, chills for no reason, swollen lymph nodes, get really nauseous at times.
I am freaking out since this was just dropped in my lap.
I know I'll have a lot of questions for the result of blood work appointment. Is there any questions that I should ask?
Any information would be appreciated.
I know I am totally rambling and I am truly sorry. After I get a good grasp of what all this means I will communicate better.
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3masongirls - Name: Tari Prince
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 5/3/2016
- Age at diagnosis: 46
Re: Recently diagnosed with MGUS
Hi Tari,
Welcome to the forum, but sorry to see that you have joined our club.
The first thing to realize with MGUS is that it only typically has a 1.5-2%/year chance of evolving into multiple myeloma. So, do try to keep that in mind through this entire process. It's easy to lose sight of this fact as I am sure you are feeling quite anxious and frightened right now - we've all been there.
Age 46 is a bit on the young side for a diagnosis of MGUS in the general population, but we have folks on this forum that have had MGUS, smoldering multiple myeloma and multiple myeloma in their 20s and quite a fair number of patients in the 40s and 50s. You might also find this Beacon poll to be interesting:
https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-mgus-2013-t1984.html
The first thing I would recommend is to seek out a multiple myeloma specialist, even for a diagnosis of MGUS. It pays to be first evaluated by a specialist who lives and breathes this disease with many patients on a daily basis. You don't necessarily need to see a specialist for your upcoming visit or on a continuing basis, but I would recommend seeing one for a second opinion for your initial diagnosis shortly after your upcoming appointment. If you let us know what city you are in, folks can make some recommendations.
You definitely want to walk away from your appointment with copies of all your lab reports. You also specifically want to know the following lab values, so be sure to ask your doc what these values are (including the units of measure). These are the key markers you will want to personally understand and track over time:
- M-spike (aka paraprotein, M-protein, abnormal protein band, etc)
- Serum lambda and kappa free light chain values, including the ratio
- Immunoglobulin levels (IgG, IgA, IgM)
- Hemoglobin and red blood cell levels, creatinine and calcium levels.
You also want to pay particular attention to your "CBC" test results, especially your hemoglobin and red blood cell levels since you are feeling fatigued.
You want to know what kind of MGUS "isotype" you have (IgG-kappa, IgG-lambda, etc). This shows up on what is called an immunofixation test
Have the doctor explain the meaning behind any of your lab values that are out of range.
You also want to be asking if the doctor is planning on any radiological imaging such as an MRI or PET/CT. If not, why not and when would he/she suggest one?
You also want to ask if he/she will be planning on ordering a bone marrow biopsy for you. If not, why not and when would he/she suggest one?
Does the doctor want to run a 24 hour urine test? (he/she may or may not see the need for it)
How often will he/she want to see you to get re-tested going forward (likely every 3-6 months for the first year or so)?
Lastly, I would write down all of your questions beforehand and take a smartphone or other recording device (or friend) to record your meeting. You will likely get bombarded with a lot of info and will get sidetracked and won't likely remember all of the points that the doctor makes. Most everyone feels like "Bambi in the headlights" at these first appointments.
Good luck and let us know how things go.
Welcome to the forum, but sorry to see that you have joined our club.
The first thing to realize with MGUS is that it only typically has a 1.5-2%/year chance of evolving into multiple myeloma. So, do try to keep that in mind through this entire process. It's easy to lose sight of this fact as I am sure you are feeling quite anxious and frightened right now - we've all been there.
Age 46 is a bit on the young side for a diagnosis of MGUS in the general population, but we have folks on this forum that have had MGUS, smoldering multiple myeloma and multiple myeloma in their 20s and quite a fair number of patients in the 40s and 50s. You might also find this Beacon poll to be interesting:
https://myelomabeacon.org/forum/weekly-poll-age-at-diagnosis-for-mgus-2013-t1984.html
The first thing I would recommend is to seek out a multiple myeloma specialist, even for a diagnosis of MGUS. It pays to be first evaluated by a specialist who lives and breathes this disease with many patients on a daily basis. You don't necessarily need to see a specialist for your upcoming visit or on a continuing basis, but I would recommend seeing one for a second opinion for your initial diagnosis shortly after your upcoming appointment. If you let us know what city you are in, folks can make some recommendations.
You definitely want to walk away from your appointment with copies of all your lab reports. You also specifically want to know the following lab values, so be sure to ask your doc what these values are (including the units of measure). These are the key markers you will want to personally understand and track over time:
- M-spike (aka paraprotein, M-protein, abnormal protein band, etc)
- Serum lambda and kappa free light chain values, including the ratio
- Immunoglobulin levels (IgG, IgA, IgM)
- Hemoglobin and red blood cell levels, creatinine and calcium levels.
You also want to pay particular attention to your "CBC" test results, especially your hemoglobin and red blood cell levels since you are feeling fatigued.
You want to know what kind of MGUS "isotype" you have (IgG-kappa, IgG-lambda, etc). This shows up on what is called an immunofixation test
Have the doctor explain the meaning behind any of your lab values that are out of range.
You also want to be asking if the doctor is planning on any radiological imaging such as an MRI or PET/CT. If not, why not and when would he/she suggest one?
You also want to ask if he/she will be planning on ordering a bone marrow biopsy for you. If not, why not and when would he/she suggest one?
Does the doctor want to run a 24 hour urine test? (he/she may or may not see the need for it)
How often will he/she want to see you to get re-tested going forward (likely every 3-6 months for the first year or so)?
Lastly, I would write down all of your questions beforehand and take a smartphone or other recording device (or friend) to record your meeting. You will likely get bombarded with a lot of info and will get sidetracked and won't likely remember all of the points that the doctor makes. Most everyone feels like "Bambi in the headlights" at these first appointments.
Good luck and let us know how things go.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Recently diagnosed with MGUS
Thank you so much for the information.
My hematologist did say, after I told him all my symptoms, that there were all kinds of scans and bone marrow tests and other tests that he can do after we get the results from the blood work. He said lets go 1 step at a time, and I will do everything I can to give you answers whether good or bad. I told him that sounded like a plan to me.
I will keep you updated and I will ask the questions that you posed to me. Once again, thanks for all the information.
I live in Anderson, South Carolina.
My hematologist did say, after I told him all my symptoms, that there were all kinds of scans and bone marrow tests and other tests that he can do after we get the results from the blood work. He said lets go 1 step at a time, and I will do everything I can to give you answers whether good or bad. I told him that sounded like a plan to me.
I will keep you updated and I will ask the questions that you posed to me. Once again, thanks for all the information.
I live in Anderson, South Carolina.
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3masongirls - Name: Tari Prince
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 5/3/2016
- Age at diagnosis: 46
Re: Recently diagnosed with MGUS
Happy to help. Your doc's next steps sound logical to me.
I'm not aware of any multiple myeloma specialists currently still located in SC, but here is a link to some facilities throughout the USA that have multiple myeloma specialists. I don't know if your insurance will cover you out of state, but Emory University in Atlanta might be your closest choice for a multiple myeloma center of excellence.
https://myelomabeacon.org/resources/treatment-centers/
I'm not aware of any multiple myeloma specialists currently still located in SC, but here is a link to some facilities throughout the USA that have multiple myeloma specialists. I don't know if your insurance will cover you out of state, but Emory University in Atlanta might be your closest choice for a multiple myeloma center of excellence.
https://myelomabeacon.org/resources/treatment-centers/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Recently diagnosed with MGUS
There is a myeloma specialist at the Levine Cancer in Charlotte, which is very close to South Carolina. Actually, I live 5 miles from South Carolina. Dr. Saad Usmani came to Charlotte after being at Little Rock, Arkansas. Duke University with Dr. Gasperetta and UNC Chapel Hill also have programs!
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bluemountain
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