[KimP]

Husband diagnosed today with multiple myeloma

by KimP on Tue Dec 13, 2016 10:24 pm

I've been reading this site for weeks as we worked through the long process toward diagnosis. I can't thank you enough for all of the helpful information and inspiring stories found here on this incredible site. Weeks of reading this site prepared me for today's oncology follow up, where we learned that my husband, who is 43 years old, has active multiple myeloma. This all started in October with abdominal pain that turned out to be a blood clot.

Here's what we know so far:

• Nonsecretory
• Kappa free light chain 744 (ref range 3.3-19.4)
• Kappa / lambda ratio > 300
• 30% plasma cells found in bone marrow biopsy
• No chromosomal abnormalities found in FISH test
• No CRAB findings
• No hot cancer uptake on PET
• No bone lesions on PET
• Positive for Bence Jones in 24-hour urine test
• Awaiting B2 globulin test

One thing that was odd is that the oncologist said he could not see the heavy chain and ordered a new test to check for IgD or IgE. We're not sure what that means.

One important decision we soon will need to make is where my husband should be treated. We live in San Antonio, Texas

Many thanks! You are all wonderful.
Kim

[TerryH]

Re: Husband diagnosed today with multiple myeloma

by TerryH on Wed Dec 14, 2016 12:34 am

Hi Kim,

I'm sorry to hear about your husband's diagnosis, but I'm glad you found this forum. Welcome.

It looks like your husband has light chain multiple myeloma. It doesn't seem entirely correct to describe it as nonsecretory, given his elevated kappa light chain level and kappa-lambda ratio.

You say he has no "CRAB" symptoms. What are his serum calcium and creatinine levels, and what is his hemoglobin level?

Regardless of whether he has CRAB symptoms, your husband's kappa-lambda ratio being over 100 means he has active multiple myeloma according to the new diagnostic criteria for multiple myeloma published in 2014. See this article for more details:

https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/

MD Anderson in Houston is the nearest major myeloma treatment center to you, and has many well respected myeloma specialists. Your husband could be seen periodically there -- perhaps every 6-12 months, and whenever key treatment decisions need to be made -- but most of the treatment he receives could take place where you live in San Antonio. I'm sure a local hematologist / oncologist would be willing to coordinate care of your husband with a myeloma specialist at MD Anderson.

Good luck!

[Multibilly]

Re: Husband diagnosed today with multiple myeloma

by Multibilly on Wed Dec 14, 2016 8:39 am

Hi Kim,

Welcome to the forum. Terry asks some good questions and has some good suggestions. Getting some additional direction out of MD Anderson would be worth the trip to Houston, in my opinion.

Regarding the IgD and IgE test, there are 5 major types of immunoglobulins: IgG, IgA, IgM, IgD and IgE. Most forms of myeloma produce either monoclonal IgG or IgA-type immunoglobulins (m-spikes). More rarely, there are are some myeloma patients that present with IgM M-spikes. Very rarely, there are some patients that present with IgD or IgE m-spikes. There are also versions of myeloma which only produce monoclonal kappa or lambda free light chains with no M-spike. And then there is truly nonsecretory myeloma, which produces no monoclonal immunoglobulins or monoclonal free light chains that are detectable in one's blood or urine whatsoever.

Typically, a doc will test one's overall IgG, IgA, and IgM levels to see if one of these levels might be out of whack due to the presence of a monoclonal variant of one of these immunoglobulins. It sounds like your doctor is being thorough and is now going back and testing your husband's IgD and IgE levels to make doubly sure that your husband truly has nonsecretory multiple myeloma and that there isn't potentially some monoclonal IgD or IgE M-spike present in his blood (although his serum immunofixation test should have provided an indication if there was an m-spike of any type). But if there are already Bence Jones proteins (monoclonal free light chains in the urine) that are being detected in your husband's urine and he has a serum free light chain ratio of 300, his myeloma sounds more like light-chain myeloma rather than truly nonsecretory multiple myeloma (as Terry mentioned .... again, truly nonsecretory multiple myeloma would have no detectable monoclonal immunoglobulins or monoclonal free light chains showing up in one's blood or urine).

Lastly, the B2 globulin test you are waiting on is probably a beta2 microglobulin (B2M) test. The B2M marker is helpful in helping make an initial staging diagnosis and provides a rough idea of the overall tumor burden in a myeloma patient.

Hope this helps a bit.

[TerryH]

Re: Husband diagnosed today with multiple myeloma

by TerryH on Wed Dec 14, 2016 10:49 am

Thanks, Multibilly, for stepping in with additional information related to the IgD and IgE question that Kim raised.

I pondered the issue a little as I was putting together my posting, and I initially had the same reaction you did. But then I wondered if checking the IgD and IgE was really necessary. Shouldn't M-spikes of any sort – including IgD and IgE – be picked up on an serum protein electrophoresis (SPEP) test, and wouldn't a serum immunofixation pick up monoclonal IgD or IgE?

If that's the case, and given that an SPEP and serum immunofixation were almost certainly run in the case of Kim's husband, why would testing for IgD and IgE be particularly necessary?

(I see that you allude to this issue a bit in your reply, but I just want to double check my thinking for future reference. Hope you don't mind. Also, I hope you don't mind this slightly technical tangent, Kim. It will be over soon!)

[Multibilly]

Re: Husband diagnosed today with multiple myeloma

by Multibilly on Wed Dec 14, 2016 11:08 am

Hi Terry,

I was indeed thinking along exactly the same lines as you. You would think that the SPEP and immunofixation tests would have caught the presence of any monoclonal IgD or IgE.

[TerryH]

Re: Husband diagnosed today with multiple myeloma

by TerryH on Wed Dec 14, 2016 11:36 am

Thanks Multibilly.

I did some additional digging, and everything I've seen suggests that monoclonal IgD and monoclonal IgE should be picked up by serum immunofixation testing.

Also, in a study of IgD myeloma cases, the mean M-spike at diagnosis was about 1 g/dL, so it's not like IgD M-spikes are so low they can't be observed. (I wasn't able to find similar data for IgE multiple myeloma, which is very rare.)

[Multibilly]

Re: Husband diagnosed today with multiple myeloma

by Multibilly on Wed Dec 14, 2016 12:10 pm

Kim, first off, keep in mind that this is just an academic discussion at this point. The chances of this being a case of IgD or IgE myeloma are very, very slim. There are maybe less than a 100 reported cases of IgE myeloma.

Terry, I did some more reading too. It turns out that the normal concentration of IgE is about 300x less than IgG. An IgE M-spike can therefore be difficult to quantify on an SPEP. Note this case study where there was clearly an IgE M-spike, yet the SPEP couldn't measure it. But it does look like the IFE was able to catch the presence of an IgE m-spike, although the article isn't clear on that point in that it only states what it could not detect.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2704975/

[TerryH]

Re: Husband diagnosed today with multiple myeloma

by TerryH on Wed Dec 14, 2016 12:53 pm

Thanks for the follow-up, Multibilly.

I'm not surprised by what you found about IgE. My initial research found reference ranges for IgE which were in units different than the normal g or mg per liter or deciliter. At that point, I decided not to pursue it further. I did see a couple of references, mainly from laboratory websites, suggesting that serum immunofixation should pick up monoclonal IgE. However, those references were not focused on IgE, but on serum immunofixation picking monoclonal IgA, IgG, IgM, IgD, and IgE -- that is, both IgD and IgE were included in the list of immunoglobulins which, if a monoclonal version was present, could be picked up by serum immunofixation.

Regardless of whether or not Kim's husband has IgD or IgE multiple myeloma, I would think that his disease will be monitored using his free light chain results.

Kim - I'm sorry we've taken you (and everyone else) on this technical side trip. I hope you don't mind too much.

[KimP]

Re: Husband diagnosed today with multiple myeloma

by KimP on Wed Dec 14, 2016 5:03 pm

Wow! Thank you all for the great discussion. Your comments led me back to the oncology office this afternoon to get my hands on more of the lab information. I have figured out a few more bits, but there are still a few open questions in my mind. I think I will need to become an MD to figure all of this out. Thank goodness there are folks like you who can help us newbies through this process.

Let's begin with the good news:

The beta2 microglobulin (B2M) test came back at 2.1 mg/L (thanks for explaining this Multibilly!)
Albumin is 4.6 g/dl (Urine Albumin UPE % is 5.5, but I am not sure that is relevant when using the ISS staging system)

So would this put my husband into Stage 1, I believe. Not that staging means a lot (so many other factors), but for some reason, it would bring some level of comfort.

TerryH - Thanks for your warm welcome and clear explanations. In terms of CRAB, here are the stats I have so far which the oncologist said were good, but I see that I have some apples-to-orange measurements vs. the IMWG criteria in the article you linked to. I'll work on conversions next. I should have paid more attention to the metric system conversions I was taught in college!

Calcium 9.0 mg/dl (IMWG criterion is >11.5)
Creatinine 0.9 mg/dl (IMWG criterion is >1.73 mmol/l)
Hemoglobin 14.7 g/dl (IMWG criterion is <10 g/100ml )
No bone lesions found on PET but having a skeletal x-ray done tomorrow to look for smaller lesions.

I really valued the scientific response related to the question of secretory / nonsecretory. I too now wonder if that is the correct terminology. Here is what I can see on the labs.

No M-spike / SPEP in blood
Kappa light chain free 745.5 mg/L marked High
Lambda light chain free 1.34mg/L marked Low
K/L ratio 556 marked high - this was the trigger to all of this. It's even higher than I thought.

Urine test did show an M Spike of 98 mg/24 marked high

Now to the complexity surrounding the type of immunoglobulins: IgG, IgA, IgM, IgD and IgE. Here is what the labs say so far. I have no clue what to make of this. All the oncologist said is that he couldn't see the heavy chain after testing all of them but E and D.

Immunology:

IgG quant mg/dl 331 (marked LOW)
IgA quant no value, marked "Note", but I can't see the note!
IgM quant - same as for IgA quant
IgE IU/mL reading come in today and says 10; not sure what to make of that
IgD - no result yet, but it was ordered.

As for next steps, we agree to take 30 days to figure out the best location for treatment and will take your advice to visit MD Anderson as well as UAMS in Arkansas.

All of this comes as a complete shock. Up to the point of getting a blood clot in mid-October, my husband was in top form. Running half marathons regularly, lifting weights, etc. Sounds like he is very lucky he had a blood clot. That must be the silver lining.

Once I get up to speed on this, I hope to pay it forward and help others. Thanks!

Kim

[KimP]

Re: Husband diagnosed today with multiple myeloma

by KimP on Sat Dec 17, 2016 11:28 pm

Hello,

Thanks again for all of the support. My husband's IgE and IgD test came back and are both normal, IgG came in low and IgA and IgM came back with "no value." Are there other tests to see what heavy chain is involved? Is that the right term?

Kim