Hello,
Thank you Multibilly for your explanation and kindness.
I was looking in reports and couldn't find the kappa / lambda free light chain (Freelite) ratio.
Have no idea, I was in doctor's office and took recent blood test and still nothing.
Fulorescence In Situ Hybridiztion(FISH) raport show averything negative but only one positive:
Positive for t(11;14)(q13;q32)
Also one abnormality: Probe Name: CCND1/IgH [t(11;14)] Abnormal ISCN: nuc ish(CCND1,lghH)x3(CCND1 con IgHx2)[37/200]
Maybe I should call doctor office and ask for it? This week the doctor is not there, only staff.
Thank you for helping me!
PS: In morphology report I find something called lambda:
Section FINDINGS:
- Plasma cell myeloma, lambada-monoclonal, at least 20% marrow involvement.
- Congo red for amyloid is negative.
- Low-normocellular (50%) bone marroe exhibiting trilineage hematopolesis.
- Increased storage irn, diminisged sideroblastic iron, and no ring sideroblasts.
- No pathologic reticulin fibrosis.
Forums
Re: Do I have smoldering myeloma or MGUS?
I would ask the office for all copies of all lab reports run by the doctor, plus a copy of his diagnosis writeup (you are entitled to all this information). It would be odd for him/her to run a bone marrow biopsy and not have done a free light chain test (especially since you have such a low M-Spike and a 20% plasma level reading from your bone marrow biopsy). You will want copies of all these reports if you see a multiple myeloma specialist
The t(11;14) detail is what is known as "translocation", where a couple of parts of your chromosomes get swapped around. This particular translocation is not worrisome and would categorize you as standard risk by the Mayo criteria (if you had active multiple myeloma, which you do not). You can find more details on how the Mayo ranks various genetic abnormalities relative to the risk of the disease for newly diagnosed ACTIVE multiple myeloma patients (again, you are not active).
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
The t(11;14) detail is what is known as "translocation", where a couple of parts of your chromosomes get swapped around. This particular translocation is not worrisome and would categorize you as standard risk by the Mayo criteria (if you had active multiple myeloma, which you do not). You can find more details on how the Mayo ranks various genetic abnormalities relative to the risk of the disease for newly diagnosed ACTIVE multiple myeloma patients (again, you are not active).
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do I have smoldering myeloma or MGUS?
Thank You so much!
I will see my doctor in 18th she is coming back.
I also trying to get to Hackensack specialists. Myeloma Devision.
I'm in the process of changing my insurance from UnitedHealthCare to Horizon Family Care. They don't accept United Health Care.
I have question. Is low M-Spike 0.19 good or bad, should I have more?
I know plasma I have high 20%, but I don't know how these two are related.
Thank You!
I will see my doctor in 18th she is coming back.
I also trying to get to Hackensack specialists. Myeloma Devision.
I'm in the process of changing my insurance from UnitedHealthCare to Horizon Family Care. They don't accept United Health Care.
I have question. Is low M-Spike 0.19 good or bad, should I have more?
I know plasma I have high 20%, but I don't know how these two are related.
Thank You!
Re: Do I have smoldering myeloma or MGUS?
Hi Philip,
An M-spike of 0.19 g/dL is low and that's a good thing. People without myeloma or MGUS do not have any M-spike. When a myeloma patient is treated for the disease, one of the things the doctors do is track how the patient's M-spike responds to treatment. The hope is that it will drop down all the way to zero. If it does, that's would be a "complete response" to treatment.
The M-spike measures how much "monoclonal" protein (or "paraprotein") there is in your blood. Monoclonal protein only comes from myeloma cells. That's why people without myeloma don't have an M-spike. They don't have any myeloma cells creating monoclonal protein.
In very rare cases, myeloma cells do not create monoclonal protein, and myeloma patients with that form of the disease do not have an M-spike. But, as I said, that form of the disease is very rare, maybe one or two percent of all myeloma cases.
Hope this helps. Good luck to you, and keep us posted on how you're doing and what you find out.
An M-spike of 0.19 g/dL is low and that's a good thing. People without myeloma or MGUS do not have any M-spike. When a myeloma patient is treated for the disease, one of the things the doctors do is track how the patient's M-spike responds to treatment. The hope is that it will drop down all the way to zero. If it does, that's would be a "complete response" to treatment.
The M-spike measures how much "monoclonal" protein (or "paraprotein") there is in your blood. Monoclonal protein only comes from myeloma cells. That's why people without myeloma don't have an M-spike. They don't have any myeloma cells creating monoclonal protein.
In very rare cases, myeloma cells do not create monoclonal protein, and myeloma patients with that form of the disease do not have an M-spike. But, as I said, that form of the disease is very rare, maybe one or two percent of all myeloma cases.
Hope this helps. Good luck to you, and keep us posted on how you're doing and what you find out.
Re: Do I have smoldering myeloma or MGUS?
Thank You Guys!
You really helping me a lot to understand all of it.
In other post you mention I'm in standard risk smoldering myeloma. Do you mean I'm in the middle of risk?
Doctor didn't give me information, just recommended internet to find out more about myeloma. She explained some but I was to shocked to think.
Thank You,
You really helping me a lot to understand all of it.
In other post you mention I'm in standard risk smoldering myeloma. Do you mean I'm in the middle of risk?
Doctor didn't give me information, just recommended internet to find out more about myeloma. She explained some but I was to shocked to think.
Thank You,
Re: Do I have smoldering myeloma or MGUS?
Philip,
I know this is confusing.
But don't confuse risk of progression for smoldering multiple myeloma with the disease risk for ACTIVE multiple myeloma.
You have either 1 or 2 risk factors for the Mayo risk of progression smoldering multiple myeloma model, which would make you either a low or intermediate risk for progressing to active multiple myeloma. You can't have 3 factors (high risk) because your M-spike is < 3.0 g/dL. But you have at least one factor because your plasma cell percentage is greater than 10%. You free light chain ratio is the unknown here. If it is less than 0.125 or greater than 8, then you would be classified as having an intermediate risk of progression. But if the free light chain ratio is greater than 0.125 and less than 8, then you would be low risk.
IF you had active multiple myeloma and were newly diagnosed as such (you are NOT), you would be classified by the Mayo has having a standard risk case of active multiple myeloma based on the genetic information you provided (the t(11;14) translocation). But this is all hypothetical since you are NOT active. I simply told you this particular active multiple myeloma risk information so that you wouldn't worry about the t(11;14) information in your FISH results.
Again, I humbly suggest you go back and read up on some of the basics on multiple myeloma. It will really help you better understand all this.
I know this is confusing.
But don't confuse risk of progression for smoldering multiple myeloma with the disease risk for ACTIVE multiple myeloma.
You have either 1 or 2 risk factors for the Mayo risk of progression smoldering multiple myeloma model, which would make you either a low or intermediate risk for progressing to active multiple myeloma. You can't have 3 factors (high risk) because your M-spike is < 3.0 g/dL. But you have at least one factor because your plasma cell percentage is greater than 10%. You free light chain ratio is the unknown here. If it is less than 0.125 or greater than 8, then you would be classified as having an intermediate risk of progression. But if the free light chain ratio is greater than 0.125 and less than 8, then you would be low risk.
IF you had active multiple myeloma and were newly diagnosed as such (you are NOT), you would be classified by the Mayo has having a standard risk case of active multiple myeloma based on the genetic information you provided (the t(11;14) translocation). But this is all hypothetical since you are NOT active. I simply told you this particular active multiple myeloma risk information so that you wouldn't worry about the t(11;14) information in your FISH results.
Again, I humbly suggest you go back and read up on some of the basics on multiple myeloma. It will really help you better understand all this.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do I have smoldering myeloma or MGUS?
Thank You!
Your posts gave me a lot of knowledge. I will study more about it all.
Mentally I'm getting better. I don't want to cry everyday but sometimes its just not that easy. I'm glad I find this forum.
I don't know if it is appropriate at this forum to ask someone to refer me to particular doctor specialist with whom had some good experience. When I called to Hackensack myeloma division, they have list of doctors hard to decide. I live in Clifton NJ.
Your posts gave me a lot of knowledge. I will study more about it all.
Mentally I'm getting better. I don't want to cry everyday but sometimes its just not that easy. I'm glad I find this forum.
I don't know if it is appropriate at this forum to ask someone to refer me to particular doctor specialist with whom had some good experience. When I called to Hackensack myeloma division, they have list of doctors hard to decide. I live in Clifton NJ.
Re: Do I have smoldering myeloma or MGUS?
When you say "Hackensack", are you talking about the John Theurer Cancer Center? Are Dr. Siegel or Vesole on your list?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Do I have smoldering myeloma or MGUS?
Multibilly asked:
Yes exactly, only I need change insurance to get there, to make an appointment.
When you say "Hackensack", are you talking about the John Theurer Cancer Center? Are Dr. Siegel or Vesole on your list?
Yes exactly, only I need change insurance to get there, to make an appointment.
Re: Do I have smoldering myeloma or MGUS?
They are both well-respected multiple myeloma specialists. Google either name along with "myeloma" to find more info on either. You may get additional recommendations from others on this forum.
Also, see:
https://myelomabeacon.org/forum/dr-david-siegel-t1484.html
Good luck.
Also, see:
https://myelomabeacon.org/forum/dr-david-siegel-t1484.html
Good luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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