dishevelled wrote:
> In case anyone is reading this thread and wants to know what happened. I
> have been diagnosed with multiple myeloma.
Hey Heather,
So sorry to hear about your diagnosis. Do you mind sharing more of the details of your diagnosis and staging? Folks on this site can help with the next steps.
Remember, take your time, evaluate all the options for treatment before starting and always get a second opinion from a multiple myeloma specialist regarding a course of treatment.
Regards,
Multibilly
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: what are the chances of me having multiple myeloma
I'm sorry to read your update. multiple myeloma is a sh--tty diagnosis, but that said, I am living with multiple myeloma and at this point I am feeling pretty good. I have my old energy back, I don't feel like I'm walking around in a haze all the time like I did before my diagnosis.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: what are the chances of me having multiple myeloma
I'll will share more on my staging and plan on April 17th after my second opinion with a specialist. My local oncologist told me that I have multiple myeloma but I am thinking I have smoldering myeloma, now that I have done some research. They found 10% plasma cell, only2 m protein, but the FISH test showed that it is high risk, or more aggressive. But because I have not met any of the CRAB, I am thinking this means I am smoldering. Could he be wrong and I could be MGUS? Also. although I have no Crab, I have had fevers for one year and I am really fatigued and back problems. Severe headaches. I have been sick so much this past year. I have also lost 40 lbs in 7 months with out trying. Just curious about whether I can experience all of this with just smoldering.
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
Re: what are the chances of me having multiple myeloma
dishevelled wrote:
> I'll will share more on my staging and plan on April 17th after my second
> opinion with a specialist. My local oncologist told me that I have multiple
> myeloma but I am thinking I have smoldering myeloma, now that I have done
> some research. They found 10% plasma cell, only2 m protein, but the FISH
> test showed that it is high risk, or more aggressive. But because I have
> not met any of the CRAB, I am thinking this means I am smoldering. Could he
> be wrong and I could be MGUS? Also. although I have no Crab, I have had
> fevers for one year and I am really fatigued and back problems. Severe
> headaches. I have been sick so much this past year. I have also lost 40
> lbs in 7 months with out trying. Just curious about whether I can
> experience all of this with just smoldering.
Hi there Heather,
If you have 10% plasma, you are right on the cusp between MGUS and Smoldering, at least for that marker. No CRAB, means you aren't symptomatic. The other marker they use is your M-Spike (may show up as paraprotein, M-Protein, serum paraprotien or monoclonal paraprotein level...all mean the same thing) and it sounds like your marker is 2.0? In my reports, this usually shows up as a separate entry/annotation and is in g/dL, so you may need to divide the 30 g/L figure below by 10 (30 g/L = 3.0 g/dL) to make it match up with your report's units. If you are 2.0, then you are below the 3.0 g/dL (30 g/L below), so that is good.
Asymptomatic (smoldering) myeloma:
Serum paraprotein >30 g/L AND/OR
Clonal plasma cells >10% on bone marrow biopsy AND
NO myeloma-related organ or tissue impairment
Monoclonal gammopathy of undetermined significance (MGUS):
Serum paraprotein <30 g/L AND
Clonal plasma cells <10% on bone marrow biopsy AND
NO myeloma-related organ or tissue impairment
Hope you find the cause of your headaches, etc. Best of luck to you.
> I'll will share more on my staging and plan on April 17th after my second
> opinion with a specialist. My local oncologist told me that I have multiple
> myeloma but I am thinking I have smoldering myeloma, now that I have done
> some research. They found 10% plasma cell, only2 m protein, but the FISH
> test showed that it is high risk, or more aggressive. But because I have
> not met any of the CRAB, I am thinking this means I am smoldering. Could he
> be wrong and I could be MGUS? Also. although I have no Crab, I have had
> fevers for one year and I am really fatigued and back problems. Severe
> headaches. I have been sick so much this past year. I have also lost 40
> lbs in 7 months with out trying. Just curious about whether I can
> experience all of this with just smoldering.
Hi there Heather,
If you have 10% plasma, you are right on the cusp between MGUS and Smoldering, at least for that marker. No CRAB, means you aren't symptomatic. The other marker they use is your M-Spike (may show up as paraprotein, M-Protein, serum paraprotien or monoclonal paraprotein level...all mean the same thing) and it sounds like your marker is 2.0? In my reports, this usually shows up as a separate entry/annotation and is in g/dL, so you may need to divide the 30 g/L figure below by 10 (30 g/L = 3.0 g/dL) to make it match up with your report's units. If you are 2.0, then you are below the 3.0 g/dL (30 g/L below), so that is good.
Asymptomatic (smoldering) myeloma:
Serum paraprotein >30 g/L AND/OR
Clonal plasma cells >10% on bone marrow biopsy AND
NO myeloma-related organ or tissue impairment
Monoclonal gammopathy of undetermined significance (MGUS):
Serum paraprotein <30 g/L AND
Clonal plasma cells <10% on bone marrow biopsy AND
NO myeloma-related organ or tissue impairment
Hope you find the cause of your headaches, etc. Best of luck to you.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: what are the chances of me having multiple myeloma
Dear dishevelled,
10% plasma cells in the right on the edge of MGUS and myeloma. Regardless, the severity of your symptoms of fatigue and weight loss is somewhat out of proportion to the burden of plasma cells seen on your biopsy. I agree that an expert opinion is critical. In addition to run-of-the-mill myeloma, they will need to think about other plasma cell disorders that are sometimes associated with lower levels of plasma cells but still make patients quite ill (for example, amyloidosis and POEMS syndrome).
Please keep us posted as to your progress and good luck!
Pete V.
10% plasma cells in the right on the edge of MGUS and myeloma. Regardless, the severity of your symptoms of fatigue and weight loss is somewhat out of proportion to the burden of plasma cells seen on your biopsy. I agree that an expert opinion is critical. In addition to run-of-the-mill myeloma, they will need to think about other plasma cell disorders that are sometimes associated with lower levels of plasma cells but still make patients quite ill (for example, amyloidosis and POEMS syndrome).
Please keep us posted as to your progress and good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: what are the chances of me having multiple myeloma
How is one tested or how should one go about getting tested for Amyloidosis or POEMS?
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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: what are the chances of me having multiple myeloma
All of the very best to you Heather as you seek your 2nd opinion.
Best,
Dana
Best,
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: what are the chances of me having multiple myeloma
Thank you all.
-
dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
Re: what are the chances of me having multiple myeloma
I Did see the specialist and had another bone marrow biopsy. My Plasma cells are now 10-15% with one large cluster consisting of more than 20%. I am smoldering and they are trying to find out why I am sick most of the time. I am seeing a dermatologist next week to look for amyloidosis and A Neurologist to rule out the POEMS. Dr. Voorhees, You were right on.
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
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