[Jacqueline]

t(4;14) with MGUS / asymptomatic myeloma

by Jacqueline on Mon Sep 01, 2014 8:06 am

Hello,

Please, excuse my poor English first.

Initially, in late 2010, I had a diagnosis of MGUS, but the peak monoclonal IgG still rising (5.8 at the beginning and 13.6 g now). My other analyses (B2, CRP, ..) are in the standard, but my IgA and IGM are low.

The hospital made ​​me do a bone marrow aspirate in April 2014 and there, on the first result, it was written "asymptomatic myeloma." I was 3% plasma cells, but almost all dystrophic.

The second result, I just got there three days says:

• CD138 cells many
• FISH: No reshuffle t (11, 14) IGH-CCND1, t (14, 16) IGH-MAF or del (17p) on the cores analyzed.
• IGH-FGFR3: positive
• Demonstration of a reshuffle t (4; 14) without increased FGFR3 expression.

I am worried because the t (4; 14) is a poor prognosis (seen on the Internet, because the hospital just sent me dry results).

Does anyone have an idea? Is there a difference between remodeling and translocation t(4;14)?

Thank you

[Multibilly]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Multibilly on Mon Sep 01, 2014 9:00 am

Hi Jacqueline,

Welcome to the forum. I'm sure this must be a worrisome time for you. Folks on this site can offer help.

My understanding is that "reshuffle" = "translocation", but your doctor should really confirm this.

Are you still asymptomatic? That is, do you NOT have any CRAB issues?

[C] Calcium elevation in the blood S. Calcium >10.5 mg/l or upper limit of normal
[R] Renal insufficiency S. Creatinine > 2 mg/dl
[A] Anemia Hemoglobin < 10 g/dl or 2 g < normal
[B] Lytic bone lesions or osteoporosis

What is your current plasma cell % and M-spike (monoclonal IgG) level? Please include the units of measure like (g/L, g/dL, etc).

Note that a t(4;14) translocation is used as one of several factors to determine the disease risk for those with SYMPTOMATIC multiple myeloma. However, it does NOT predict the risk of progression from asymptomatic multiple myeloma to symptomatic multiple myeloma.

You might find this article to be helpful in understanding the topic of prognosis for SYMPTOMATIC multiple myeloma.

S Vincent Rajkumar (Mayo Clinic), "Understanding Prognosis In Multiple Myeloma," The Myeloma Beacon, March 1, 2012.

[Jacqueline]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Jacqueline on Mon Sep 01, 2014 9:49 am

Multibilly hello, thank you very much for your reassuring response.

7 July 2014:

Calcium: 109 mg / l (normal: 88 to 106)
creatinine: 9 mg / l (normal: 5.1 to 9.5)
hemoglobin 11.8 mg (normal: 11.5 to 16)
IgG peak: 13.6 g/l

But in recent weeks I have a bad back (much less when I'm lying), and evil everywhere - in the arms, legs. I did not review the bones.

After analysis, a doctor (not the hospital where I am treated) prescribed me dietary supplements, and I'm afraid I made ​​a mistake because I take iodine, vitamin B12 and D3, selenium, zinc, etc. I take them since July 18.

I thought I saw that, in fact, iodine and B12 are not good (I had gaps and the doctor gave me what I was missing).

I also saw that myeloma is a disease that can come when there is a sense that our lives are worthless, we do not know "who we are". I often have this feeling and I cry a lot. But I work on myself to find my way of life.

[Multibilly]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Multibilly on Mon Sep 01, 2014 10:26 am

I have no idea how the medical system works in France, but I might suggest that you try to find a hematologist who specializes in multiple myeloma.

Are you saying you have never had a full body xray (skeletal survey or a whole body PET/CT), or that you just don't have the test results? I would really suggest that you get imaged, especially if you are having back pain.

Also, I'm not a doc, but it seems like you may be technically hypercalcemic at 109 mg/L (10.9 mg/dL in the USA). This meets the "C" in the CRAB criteria, which would classify you as being symptomatic, and usually means you should be discussing treatment options with your doctor.

HOWEVER, if your calcium level only recently went up after starting the D3 vitamin, the D3 may have caused your high calcium level. This actually happened to me. I simply reduced my daily D3 dose ... and my calcium level then dropped back down to normal.

Why do you think that taking iodine, B12, D3, selenium, etc are not good if you have multiple myeloma?

I understand how you feel. Others on this forum that have been through this and will likely share their thoughts and advice.

[Jacqueline]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Jacqueline on Mon Sep 01, 2014 11:10 am

I have done a total X-ray, but in 2010, at the beginning of MGUS, and there was no problem.

I am followed by a hematologist at the hospital, but every 6 months, and I havent had a bone marrow examination until April, 2014.

For calcium, I do not know how the hematologist calculate but for her it was normal because corrected with albumin (?!) ..

I have a problem with back pain only since a few weeks (perhaps at the beginning of iodin and B12?), and, reading articles on the internet, I thought I saw that iodine and vitamin B12 were accelerating the coming of myeloma.

Difficult to do a self medication ...

[Multibilly]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Multibilly on Mon Sep 01, 2014 12:13 pm

Yes, doctors can sometimes use a "corrected calcium" level based on one's albumin level. I "think" this is used when one's albumin level is not in a normal range, but I'm not positive (and I'm not a doctor). BTW, what is your albumin level?

I believe a common albumin-corrected calcium formula is what is shown here:

http://www.pharmacologyweekly.com/app/medical-calculators/calcium-correction-albumin-calculator

Here is a Beacon thread on the topic of albumin-corrected calcium measurements.

https://myelomabeacon.org/forum/corrected-calcium-levels-to-determine-hypercalcemia-t3621.html

I will leave it to others that are more familiar with multiple myeloma hypercalcemia to comment when it comes to using adjusted calcium levels in your case.

B12 and iodine are important nutrients for your body. I might not necessarily believe everything you read on the Internet and would instead rely on what your doctors are telling you (especially if they measured low iodine or B12 levels in your blood). Note that not getting enough B12 can also lead to anemia (another common problem with multiple myeloma patients).

[Beacon Staff]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Beacon Staff on Tue Sep 02, 2014 7:26 am

Hi Jacqueline,

You've gotten some very useful feedback and suggestions from Multibilly. We just want to add a few things to what he has said.

First, as Multibilly has been suggesting, you really should get greater clarity from your physician as to what your diagnosis is. Multibilly has understandably focused on the issue of whether or not you have asymptomatic (smoldering) myeloma versus (symptomatic) multiple myeloma. We think that there is just as much a question, however, as to whether you have MGUS or smoldering myeloma.

If you really do not have any myeloma-related symptoms -- which is the thing Multibilly has been (correctly) emphasizing needs to be clarified -- then, to us, your lab values do not suggest that you should be classified as having asymptomatic myeloma ... unless that term is being used to include both smoldering myeloma AND MGUS (since both are asymptomatic, pre-multiple myeloma conditions). That, however, would be rather non-standard use of the term "asymptomatic myeloma", at least among English-speaking physicians.

The Wikipedia article has a good section on the criteria for determining whether someone has MGUS, smoldering myeloma, or multiple myeloma. Here's a link to the relevant section of the article:

http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria

(Unfortunately, the French version of the article does not have a Diagnostic Criteria section that is as detailed as what is in the English version.)

Second, as you have probably read elsewhere, there is evidence that the t(4;14) chromosomal abnormality is associated with more rapid progression to multiple myeloma from smoldering myeloma. The relevant study is discussed in this Beacon article:

"Chromosomal Abnormalities May Identify Smoldering Myeloma Patients At Higher Risk of Progression," The Myeloma Beacon, March 29, 2013.

We are not aware, however, of any similar findings linking t(4;14) to a higher risk of progression from MGUS to multiple myeloma.

We hope this is helpful. Let us know if you have any further questions we can help you with.

P.S. - If you have not already seen it, this forum discussion,

"Questions from France about smoldering myeloma," Beacon forum discussion started April 22, 2014

may be of interest to you.

[Jacqueline]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Jacqueline on Tue Sep 02, 2014 4:47 pm

Thank you a lot of great tact your answers.

I only see a hematologist in October, there is no possible rendez-vous before, and my GP is too limited. That's why I hope searching the Internet

My rates serum albumin: 42 g/L (normal: 35-52), but in the electrophoresis of serum proteins: 48.2 g/L (normal: 40.2 to 47.6).

My red cells (RBCs) are a little lower, but I've done the analysis before taking vitamin B12 (I hope it's a lack of B12 and no myeloma which lowers red blood cells).

I would still have questions, please:

I have 3% plasma cells in the bone but they are mostly dystrophic. Is this possible in MGUS?

And t(4; 14): Can it be found in MGUS?

And finally, I have back pain in the leg muscles (this is new). Is this a bad sign?

Again thank you.

[Multibilly]

Re: t(4;14) with MGUS / asymptomatic myeloma

by Multibilly on Tue Sep 02, 2014 6:42 pm

Jacqueline,

I don't know what the significance of "dystrophic" is in this context (I'm not a doc), but a 3% plasma cell level is in the range of what you would see in a person without multiple myeloma. Also, be aware that different samples from a BMB can yield different plasma cell percentages on any given day (the disease is not spread evenly throughout your bone marrow). So, your plasma cell level may be different if you re-measured it, even though your disease may not have progressed.

Also, as the Beacon staff pointed out, if you have no CRAB symptoms and your plasma cell % is less than 10% (yours is 3%), then you would technically be classified as MGUS, not asymptomatic multiple myeloma (smoldering multiple myeloma).

You can have genetic abnormalities such as t(4;14) with any stage of a monoclonal gammopathy (MGUS, smoldering multiple myeloma or symptomatic multiple myeloma).

If your back pain feels like it is coming from your spine, you again might be well advised to get re-imaged to look for any bone issues in your spine (the B in CRAB). Others can comment on muscle pain in one's legs.

Hope this helps a bit.