[KelleyC]

What tests to check for multiple myeloma?

by KelleyC on Sun Dec 25, 2016 1:08 am

Hello everyone,

First of all, I would like to say that this is an amazing forum, full of courageous and amazing people. I first came across this forum a few years ago, never joined, but found it very helpful during my Dad's illness while I cared for him, and even after he passed away. My Dad developed multiple myeloma (light chain) sometime after another cancer, and it was very aggressive and God awful to witness, not only for myself, but also for him, I am certain.

So, fast forward to around April of this year. I started to feel sort of off with gastrointestinal issues and had this weird sudden onset while standing outside (I live in Canada) of Raynaud's phenomenon with my fingers turning white. It is been bothering ever since.

Then, over the past 3 months or so, my appetite has declined, I have lost a good amount of weight, and have become extremely fatigued. It is not a normal fatigue that sleep will fix, it is this body, burning muscle pain type of fatigue that I have never experienced before.

I am also very thirsty all of the time (no diabetes) and have a lot of muscle/bone pain, cramping numbness and twitching mainly in my back, arms and legs, specifically my right femur/thigh area, which makes sleeping quite a challenge. I also now have swollen areas around the joints of both elbows that keep enlarging, they almost feel like a combination of fluid and/or hard deposits of some kind, and the muscles in my arms burn as if there is a lactic acid buildup. ANA and RA were normal and the doctor said it was like a pseudo bursitis or some arthritis condition like polymyalgia rheumatica, or something localized to those joints.I also notice it behind one of my knees now, but there is no redness, just tenderness.

I found a family doctor who ended up referring me to a hematologist for some swollen glands he found, as well as a slightly low hemoglobin level, slightly high calcium level, and noted a persistently low anion gap, which after some research, suggests it could indicate underlying issues, such as the presence of proteins that are found with multiple myeloma, but not always.

Ultrasound of the lymph nodes did not seem to show much and was pretty inconclusive, other than they were a bit enlarged. I am booked to have a CT scan of my neck, chest, abdomen and pelvis on December 29th.

I discussed my extensive family cancer history with the hematologist, but she initially felt I was too young to be tested for multiple myeloma (I am 35) yet did mention at my most recent visit on Wednesday, that depending on what my CT shows, she may order specific tests for multiple myeloma, as my GFR is steadily decreasing. It went from 94 two weeks ago, to 83 and now my uric acid is elevated, and never has been before.

They are all just the weirdest symptoms,and I feel absolutely horrible. I see my hematologist again Jan 9th I believe, and plan to ask her to order some bloodwork for multiple myeloma, and want to be sure I ask for all of the correct tests. From what I can recall from my Dad and reading on here that would be something like a SPEP and immunofixation test? Is there anything else anybody recommends? I also assume any oddities might show up on the CT scan as well? I am also thinking of asking for an X-ray for my right thigh, as the pain at night has been getting excruciating.

Thank you in advance for reading this and answering my questions. I have seen first hand what multiple myeloma is like, and I commend each and every one of you bravely fighting each and every day.

Kelley C.

[Multibilly]

Re: What tests to check for multiple myeloma?

by Multibilly on Sun Dec 25, 2016 9:56 am

Hi Kelley,

Welcome to the forum.

A serum immunofixation (IFE) and SPEP would indeed be two excellent first-line tests to check for myeloma.

A CT scan may or not flag the presence of myeloma disease. This is because myeloma can present in different ways and may or may not involve bone destruction. But a CT scan is a good test for looking for bone myeloma-related destruction such as lytic lesions, should the disease be producing any lesions.

If you are having a whole-body low-dose CT scan, I don't believe that you would need an xray of your thigh in addition to the CT scan (assuming you are having a whole-body CT that would include scanning your legs). The CT scan itself should pick up on any possible bone destruction in your femur.

Given your family history, I would be asking for an IFE and SPEP regardless of the CT results. If the SPEP and IFE suggest a plasma cell disorder such as myeloma, then you would follow up with a serum free light chain assay, quantitative immunogloblulin and beta2 microglobulin test for the next round (although you could simply ask that these tests be performed along with the first-round IFE and SPEP tests - it kind of depends on how conservative your doctor is when it comes to ordering lab tests). If all of those lab tests indicate something such as myeloma, then you would move on to get a bone marrow biopsy.

Merry Christmas and good luck with your next round of tests. Let us know how things turn out.

[KelleyC]

Re: What tests to check for multiple myeloma?

by KelleyC on Sun Dec 25, 2016 11:12 am

Merry Christmas Multibilly!

Thank you so much for your thoughtful and informative reply. I cannot even tell you how much this has helped me. The CT scan is only of my neck, chest, abdomen and pelvis. I think though an xray of my leg should be easy enough to obtain. Thinking back, it has been bothering me for quite a while, but I always attributed it to muscle pain, but in reality it does not feel like a muscle pain, it is getting worse, and I cannot stretch it out and make it feel better.

I will ask her for the IFE and SPEP, and see if she will do the other tests you mentioned all at once, as well as another GFR, kidney function tests, etc.

Thank you again. Your information is extremely helpful. I cannot believe I am even looking these things up for myself, as I have always been healthy, but I need to figure out what is going on. Something is very off with my body.

Kelley C