[IndianaMomTo4]

My situation - in the process of diagnosis

by IndianaMomTo4 on Mon May 23, 2016 4:47 am

Hello all,

I am new and have been reading and lurking for 3 weeks. First, I am so impressed with this site and the wonderful resource it is for anyone dealing with a diagnosis or possibility of a diagnosis. On a sleepless night, I decided to share about myself and where I'm at on this road.

I just turned 50 and at a recent check up was told I may possibly have multiple myeloma. I have been a chronic pain patient for 5 years. I have degenerative disc disease and severe neck pain from herniated discs at C3-C4, C4-C5, C5-C6 with radiculopathy and spinal stenosis. For two years I 've been monitored for reduced kidney function with estimated GFR's of 40 to 50 range. In January I developed neuropathy in my feet, a new symptom.

My pain doctor ran blood work and I had an elevated sed rate and CRP. She repeated tests in 6 weeks and levels were slightly higher. When I went to my internal medicine doctor, he brought up the possibility of multiple myeloma, which was a huge shock! He ran more tests and called me in to go over results, never a good sign!

He said on the free light chain assay my kappa level was slightly elevated at 39.8 mg/L and my lambda was normal at 20.1 mg/L. He didn't seem able to say if this definitely meant a diagnosis or not. He said he had only diagnosed multiple myeloma 3 times in his practice and that while my levels were not normal, they also weren't that high.

I asked about the possibility MGUS and he said since I had reduced kidney function he wasn't sure. He also said because of the condition of my cervical spine it made me a "hard case" to diagnose. He said I could either wait 6 months and see what my levels did, see a local oncologist, or be referred to the multiple myeloma clinic in Indianapolis. My daughter is an RN and my son a medical student and both wanted me to go to Indy.

I have my first appointment at the Simon Cancer Center on Wednesday. I am to take a 24-hour urine sample with me and my doctor said they may want to do a bone marrow biopsy.

Has anyone here had any experience with this cancer center or had an experience similar to mine?

Are there any questions I should definitely ask?

Thanks for taking the to time to read this and sorry it's so long.

[Multibilly]

Re: My situation - in the process of diagnosis

by Multibilly on Mon May 23, 2016 7:58 am

Hi Indianamomto4,

Sorry to hear about your situation, but I'm glad you found this forum. I'm also happy to see that you are going to the Simon Cancer Center (which several folks on this forum have used for the diagnosis and treatment of their multiple myeloma).

You are right that your free light chain values are not that far off, but free light chains won't tell the whole story with this disease.

Did your doctor run a serum immunofixation (IFE) and serum protein electrophoresis test (SPEP)? Respectively, these two tests would tell you if you have any monoclonal protein in your blood and the level of that monoclonal protein via what is known as an M-spike (might also be called "abnormal band", "abnormal protein band", "paraprotein", "M-protein", etc).

Do you know your hemoglobin, creatinine, and calcium levels from your CBC and metabolic panel tests?

I would also be asking for an MRI of your spine or a PET/CT given your current issues with your spine and the possibility of a plasma cell disorder. I might also inquire about the possibility of amyloidosis given your free light chains are not that far off, but you are suffering from reduced kidney function.

Let us know how things go on Wednesday.

[IndianaMomTo4]

Re: My situation - in the process of diagnosis

by IndianaMomTo4 on Mon May 23, 2016 12:04 pm

Hello Multibilly,

Thank you for your reply. The levels from CBC you asked about were all within normal range. The only other level that was off besides the ones I previously mentioned was an unusually high vitamin B12 level for someone who doesn't take any supplementation. I have also read this can be related to kidney function?

When my doctor tried to order the SPEP test, the lab his office uses said that they are only running that test on bone marrow now and not blood. At my follow-up appointment, I asked about sending it to another lab after reading on this site about others still able to have the SPEP test and its importance. He was adamant that this test had been phased out and wouldn't listen to what I had read. I got the feeling that while being an internal medicine doctor, he was not very knowledgeable about multiple myeloma or MGUS and the related testing and diagnosis criteria. It made it that much more difficult trying to understand the complexities of this disease and what is involved in being diagnosed.

I had read about light chain only myeloma or MGUS and still do not understand the difference between that type and what exactly the criteria is for diagnosis. It is very confusing and usually I have a fairly good grasp of medical jargon. This is one reason we felt a second opinion by a specialist was needed and not a retest in six months, wait and see approach.

I am thankful to hear that the Simon Cancer Center is good place to have look at my results and symptoms.

[Multibilly]

Re: My situation - in the process of diagnosis

by Multibilly on Mon May 23, 2016 12:31 pm

Well, it's good you are headed to the Simon Cancer Center. I'm not sure what your doc was thinking when he said that the SPEP test had been phased out. An SPEP based on a blood sample is a cornerstone of multiple myeloma testing and the majority of the folks on this forum routinely have that test performed.

Note that you can't diagnose light-chain multiple myeloma versus "regular" multiple myeloma without knowing the results of an SPEP, serum immunofixation and a bone marrow biopsy. Light chain multiple myeloma is simply where the disease only manifests itself via one's serum free light chains without the presence of a serum M-spike. But without an SPEP test, you don't know if you have an M-spike or not.

I'm sure the Simon Cancer Center will order an SPEP, serum immunofixation and quantified immunoglobulin (IgG, IgA, IgM) test when you see them on Wednesday.

[IndianaMomTo4]

Re: My situation - in the process of diagnosis

by IndianaMomTo4 on Fri Jun 03, 2016 10:20 am

Hi All,

I have now had two appointments at the Simon Cancer Center in Indianapolis. First I want to say how impressed I was by the center, the doctors, and all the staff. I would recommend them to anyone needing their expertise.

At my first appointment the doctor told me that he needed to do more testing because my testing was incomplete, which I already knew. He ran the CBC, SPEP, and 24-hour urine as well as repeating the free light chain assay. I went back two days ago and all labs were normal with no M-spike seen on the SPEP and no abnormal results from the 24 hour urine. The only labs out of normal range were

Estimated GFR (MDRD)
48 mL/min/1.73m2 (Low)

Estimated CRCL (CG)
55 mL/min (Low)

Free Kappa L.C. Ser QN
42.08 mg/L (High)

Free Lambda L.C. Ser QN
17.39 mg/L (normal)
Free Kappa/Lambda Ratio
2,42 (High)

There was a slight increase in the kappa and the ratio from my previous FLC assay 3 weeks ago and the lambda had a slight decrease which made my ratio a little further outside of normal than before. The doctor said the only way we will know for sure is to do a bone marrow biopsy and aspiration, which they did right away since I had someone with me who could drive. I was so thankful they just did it and I didn't have to come back for it and have time to worry about it.

I go back in week for my results. He said they would also run the test for amyloidosis but that it's not always picked up in bone marrow and sometimes a fat pad or organ biopsy is required.

I have been trying to see if any other conditions can cause the FLC ratio to be slightly elevated besides a plasma cell disorder, but haven't found any info. Has anyone here known of any other causes of a slight elevation in free light chains?

I keep holding on to hope that since my other numbers are normal and my FLC is only slightly elevated that it is something less serious. Am I just deluding myself?

Any input is appreciated.

[Multibilly]

Re: My situation - in the process of diagnosis

by Multibilly on Fri Jun 03, 2016 2:31 pm

Hi Kimberly,

I'm so happy that you hooked up with the Simon Center.

Honestly, other than a plasma cell disorder, I don't have a good explanation for your numbers given that only one free light chain value is elevated, your free light chain ratio is high and (very importantly) you have reduced kidney function that hasn't been explained by something else. Perhaps somebody else on the forum might have a different opinion?

In any case, I would suggest waiting for your bone marrow biopsy results and for the expert doctors to weigh in. However, if your bone marrow biopsy results are clean, I would suggest following up with the additional amyloidosis tests that the Simon Center mentioned. In order of accuracy of results for detecting amyloidosis, a suspected organ biopsy is best (in your case, a kidney), followed by a fat pad biopsy, followed by a bone marrow test. Note that I had a kidney biopsy done about 3 years ago and I found it to be a breeze.

Wishing you great results.

[IndianaMomTo4]

Re: My situation - in the process of diagnosis

by IndianaMomTo4 on Mon Jun 13, 2016 2:20 am

Hello,

I wanted to give an update to my last appointment at Simon Cancer Center to receive the results of my bone marrow aspiration and biopsy. We were really blessed that the biopsy showed no abnormalities and only 1% plasma cells and was also negative for amyloidosis. We of course feel so much relief after 6 weeks of worry that it may be multiple myeloma. I was surprised that the doctor still said that I have an initial diagnosis of light chain MGUS. I thought if my bone marrow was clear then both multiple myeloma myeloma and MGUS would be ruled out. He said that the two serum free light chain assays that showed elevations in the kappa and the ratio met the criteria for this diagnosis even though the elevations were slight and the bone marrow biopsy was normal.

I go back in 6 months to have my testing repeated, which he said would give a clearer picture and that if at that time my FLC assay has some how returned to normal, than this elevation was caused by some unknown fluke and I don't have MGUS. He went on to say that he does not believe the neuropathy in my hands and feet as well as the decreased kidney function is being caused by the slight elevation in my free light chains. UGH! He said I should follow up with either a rheumatologist or a neurologist. He said I could return to the kidney specialist I saw last year and ask for a kidney biopsy to completely rule out amyloidosis, but that most only order a biopsy when there is protein in the urine, which I do not have.

I am in a quandary about what to do. I feel so much relief and really just want to be done with doctors, but also don't want to be foolish about my health. The doctor said I have just enough symptoms to be bothersome, but not enough clear cut symptoms and abnormal bloodwork to make diagnosis easy. I guess time will tell the story and I will know in December if I truly have light chain MGUS or not.

Best wishes for all on this forum for health and appreciation for sharing information and helping others.

[Little Monkey]

Re: My situation - in the process of diagnosis

by Little Monkey on Mon Jun 13, 2016 5:32 pm

Hi Kimberly,

I'm echoing Multibilly's suggestion of getting an MRI of your spine or a PET/CT of the same, just to rule out other possibilities and have a look at your other spine issues.