[philip]

Do I have smoldering myeloma or MGUS?

by philip on Wed Aug 06, 2014 8:22 am

Hello,

Last Thursday I was diagnosed with smoldering myeloma.

I have 20 percent plasma cells in the bone marrow and an M-spike 0.19 g/dL.

M-spike says: 1 --- 3.1% ---- 0,19g/dL.

Is it for sure that I have smoldering myeloma?

Psychologically I'm doing very bad. Reading this forum helps me.

Is there any way to predict approximately how much time I have to progress to multiple myeloma?

Thank You.

[dnalex]

Re: Do I have smoldering myeloma or MGUS?

by dnalex on Wed Aug 06, 2014 2:41 pm

Hello, given the 20% plasma cells, I don't think it would be considered MGUS, for which the plasma cell percentage has to be less than 10%.

Has your doctor done any cytogenetic studies, as well as determine other serum / urine parameters, and skeletal survey and/or PET/MRI?

[philip]

Re: Do I have smoldering myeloma or MGUS?

by philip on Wed Aug 06, 2014 3:36 pm

Thank you for answering my question, Alex.

Cytogenetics Report:
Interpretation: Normal Male Karytope.
Coments:
Cytogenetic analysis showed no clonal or structural abnormalities.

Concurrent flow cytometric and morphologic analyses plasma cell myeloma.The karyotype provides no further diagnostic information.
Since cells involved in plasma cell disorders have a very low mitotic rate, they not be reflected in the mataphase population available for analysis.

Metaphases Counted 20 Banding Technique G-banding
Metaphases Analyzed 20 Banding Resolution 400
Metaphases Karytotype 2 Additional Cells Score 0

I had only skeletal survey and was good.

I have no idea what this all means. Please help me to understand.

Thank you.

[Multibilly]

Re: Do I have smoldering myeloma or MGUS?

by Multibilly on Wed Aug 06, 2014 4:05 pm

Alex is right that a 20% plasma percentage level indicates that you are smoldering and not MGUS. BTW, you have a somewhat high plasma percentage and a really low M-spike ... this "may" mean that you could have a "low secreting" version of smoldering myeloma and that you should be talking with your doc about how to follow the disease if this is the case.

Also, are you working with a multiple myeloma specialist?

What differentiates smoldering multiple myeloma from active multiple myeloma is whether or not your have any CRAB symptoms (hyperCalcemia, Renal issues, Anemia or Bone lesions). Blood tests tell you about the first three (CRA) items and a skeletal xray survey or a PET/CT tells you about the presence of any bone lesions (B). This is why Alex asked you about this.

I assume your doctor looked for all these CRAB symptoms if he classified you as smoldering *and discussed all of this with you)?

A cytogenetic (genetic mutations) report that was almost certainly included in part of your bone marrow biopsy report will tell you if there are any genetic factors to consider as far as the risk of the disease IF you have active multiple myeloma (but it doesn't currently indicate anything regarding your risk of progression to active multiple myeloma).

You can find a discussion on how the Mayo Clinic and PETHEMA groups rate your risk of progression in this thread:

"Risk of progression classification - smoldering myeloma?", Beacon forum thread started December 26, 2012.

To use the Mayo model, you need to know your M-spike (which is 0.19 g/dL ...again, that is really a low M-spike), your bone marrow plasma percentage (20%) and your kappa/lambda free light chain ratio (this should be in your lab results).

Try to remember that you very well may never progress to active multiple myeloma and most SMM patients never feel any worse for having this condition (which is the case with me).

Try not to fret too much ... folks on this forum can help you.

Last edited by Multibilly on Wed Aug 06, 2014 6:42 pm, edited 1 time in total.

[philip]

Re: Do I have smoldering myeloma or MGUS?

by philip on Wed Aug 06, 2014 6:41 pm

Thank you for the great explanation!

I don't think my oncologist is specialist in multiple myeloma.

She told me I have o10% per year chance to progress, and printed me something from internet. Told me some people never progress and die of something else. I am 42 years old.
I would like to get second opinion from specialist in multiple myeloma. Couldn't find one.

Today I was calling to St Joseph Hospital in Paterson NJ , got some numbers but unfortunately no one accepted my insurance (UnitedHealthcare Community Plan).

I'd like to prepare myself for everything. I have two sons and a loving wife. First day when I find out, I started drinking beer, second day crying and praying. Next days similar, today went to psychiatrist, she prescribed me antidepressant for sleeping meds. I don't know if I gonna ever take it. I want to be aware what's going on.

My wife on Saturday is leaving the country for 3 weeks. I will stay only with my 16 year old son. I have no idea how I'm gonna make it. I can't work, I'm paralyzed by fear.

You very comforted me with this sentences:

"Try to remember that only about 20-25% of all the smoldering multiple myeloma (SMM) patients ever progress to active multiple myeloma and most of these patients never feel any worse for having SMM (which is the case with me). "

Some hope. Thank You.

My brain freaks out time to time and I feel this horrible sadness and fear.

Is there a web page where I can find specialist in multiple myeloma in NJ?

Thank you for helping, this forum helps me a lot to cope.

[Multibilly]

Re: Do I have smoldering myeloma or MGUS?

by Multibilly on Wed Aug 06, 2014 6:59 pm

Philip,

I just realized I misspoke about the overall risk of progression for all SMM patients. You'd be best advised to work through the Mayo model just to get a first, simple cut at your situation. For the Mayo model, you will either be classified as low-risk or intermediate-risk, depending on what your FLC ratio is. Also, remember that this model is not that accurate, so try not to read too much into it. ... In any case, you are not a statistic at the end of the day.

Best of luck to you.

[Beacon Staff]

Re: Do I have smoldering myeloma or MGUS?

by Beacon Staff on Wed Aug 06, 2014 7:45 pm

Hi Philip,

Regarding myeloma specialists in New Jersey ... If you're close to Paterson, NJ, then the John Theurer Cancer Center in Hackensack is not that far from you, and it has a number of highly respected myeloma specialists. (Fair disclosure: The John Theurer Center is also a sponsor of The Beacon.)

There are also a number cancer centers in New York that have many well known myeloma specialists.

In general, you will find the most experienced myeloma specialists at major cancer centers.

The Beacon has a list of myeloma treatment centers which you can view here:

https://myelomabeacon.org/treatment-centers/

Best of luck to you!

[philip]

Re: Do I have smoldering myeloma or MGUS?

by philip on Wed Aug 06, 2014 8:05 pm

Hi Beacon Staff!

Thank you for link to the myeloma treatment centers. Tomorrow I'll call the John Theurer Center. I hope they will accept my insurance.

Thank You!

[philip]

Re: Do I have smoldering myeloma or MGUS?

by philip on Thu Aug 07, 2014 8:44 am

Multibilly wrote:

"I just realized I misspoke about the overall risk of progression for all SMM patients. You'd be best advised to work through the Mayo model just to get a first, simple cut at your situation."

Hi Multibilly!

What exactly did you misspoke? I don't understand this Mayo model sorry.

I wrote some information in other post but can't get sense of this medical reports.

Please help me with this if you can.

Thank You,

[Multibilly]

Re: Do I have smoldering myeloma or MGUS?

by Multibilly on Thu Aug 07, 2014 9:19 am

I pulled the 20-25% figure from a reference I heard a multiple myeloma specialist make during a debate back in 2013. However, when I look at some of the overall stats from the Mayo, etc, the overall risk of progression is a bit higher. But the point I'm trying to make is that you ought to look at the risk of progression based on your own situation ... and then clearly remember that you still may very well never progress to active multiple myeloma regardless of what the model may suggest.

Or, if you do progress, it could in fact be many years before you do and the treatments will be even better by then ... or there could be a cure by then. I truly believe the aforementioned to be the case and this is what I always try to come back to when I think about this disease. But even if you or I did progress next week, there are many solid treatment options out there today that one can utilize while maintaining a very good quality of life.

If you go through your labs and find the kappa / lambda free light chain (Freelite) ratio, we can tell you what the Mayo model predicts. We already know what your other figures are for using the Mayo model.

Again, in any case, try not to get too hung up on this risk or progression percentage.

Lastly, as you learn more about this disease and what your options are, you will become less fretful about it and you will be able to intellectualize it a lot more ... really.