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Should I keep looking into possibly having myeloma?

by ThePride on Wed Jun 29, 2016 9:56 am

Hello:

I was hoping someone might help me understand/comment on the following:

I am 45 and have been in reasonably good health, but over the last three or so months I have had virulent flu-like illnesses several times. Among other symptoms, I was having a lot of burning pain in my flanks, sternum, back, and arms. My doctors in Georgia, where I used to live, could never figure out what was going on.

I recently moved to New York, and I have continued to feel fatigued, etc., and susceptible to upper respiratory infections. I have also developed pain (not terrible, but bad enough that it nags me all the time and sometimes wakes me up) in my back, ribs, sternum, and hips. I ordered my medical records from Georgia to establish care here, and discovered that my RBC, HGB, and HCT have been very mildly low for months (by which I mean, for example, RBC of 4.18, HGB of 12.8, HCT of 38.2). Sometimes, my WBC and/or one of my lymph readings has also been very mildly low (for instance, WBC of 3.6, Monocytes Absolute at 160).

My kidney function was also down for months, ranging from a GFR of 58 to a low of 55 (this has since rebounded into the mid-70s).

Finally, a chest and abdominal CT from early May showed lumbar and thoracic spondylosis, as well as some degenerative changes to the SI joints. No suspicious osseus lesions were noted.

These readings, coupled with my fatigue and bone pain, and added to the possibility that my father may have had multiple myeloma when he passed (diagnosis was not pursued as he was in very poor health and expected to die imminently from other causes), led my new primary care to run some multiple myeloma tests.

The serum electrophoresis was normal. The UPEP showed "a slight restriction in the gamma range that may indicate the presence of a monoclonal protein." So, serum and urine immunofixation were ordered.

Both the serum and urine immunofixation tests came back completely normal: no IgM, IgA, IgG, kappa, or lambda bands that would indicate the presence of a monoclonal protein. In fact, the only protein observed in my urine was albumin.

Given all of the above, I have two questions for those who know more than I do:

  1. My primary care doctor did not give me any instructions re what to eat or drink, what meds to take or not take, during the 24-hour urine catch. So I ate, drank, and medicated as normal, including having some wine in the evening. Subsequently, I read that some medications and even alcohol can affect some test results. Is there any reason to be concerned that these otherwise very positive IFE results may have been tainted by medications or alcohol?
     
  2. At this point, does the possibility of multiple myeloma need to be further pursued? I am inclined to ask for a referral to a hematologist because of the continuing fatigue and mild anemia, anyway, but I suppose I am wondering if there is a realistic possibility that I am a true "nonsecretor" so that the above tests may have missed something. Does anyone have an opinion on what the next steps should be?
Thank you very much.

ThePride

Re: Should I keep looking into possibly having myeloma?

by Ron Harvot on Wed Jun 29, 2016 2:24 pm

Since you still have doubt, I would follow up with a hematologist/oncologist. They might do a full body bone scan to see if you have any lytic lesions, and a serum free light chain test, which is more sensitive than the SPEP. If any of those come back as suspicious, then a bone marrow biopsy could follow.

Nothing you have indicated so far points to multiple myeloma. What you really want is peace of mind. The above tests are not inexpensive, so unless there is something that really points toward a possible diagnosis, your insurance company may balk at covering the tests.

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Should I keep looking into possibly having myeloma?

by ThePride on Wed Jun 29, 2016 8:12 pm

Thank you very much Ron.

Could you please tell me why you reach the conclusion that nothing "points to" myeloma? That conclusion is obvious regarding the IFEs, but I thought the inconsistency between the UPEP and the Urine IFE, plus the other lab tests and symptoms, at least raised the possibility of something on the MGUS-multiple myeloma "spectrum." So I would have thought that serum free light chain test and some imaging would be more routine at this point than you imply.

Thank you again. I appreciate your response. And I enjoy and admire your cycling posts. I've been a runner, but I'm mulling cycling in light of my unresolved and unclear back issues.

ThePride

Re: Should I keep looking into possibly having myeloma?

by Ron Harvot on Wed Jun 29, 2016 11:24 pm

I don't believe you have any of the "CRAB" symptoms. Anemia is one of those symptoms – it's the "A" in "CRAB" – but your results are barely out of the normal range, not the more extreme anemia that is one of the CRAB symptoms. You are not showing any lytic lesions or renal impairment and you did not indicate a problem of excess calcium in your blood. That, coupled with the positive IE and SPEP tests, also seem to indicate that you are ok.

I am not a doctor, but there could be other reasons for the symptoms you are experiencing. Certainly the serum free light chain (sFLC) test will help answer your question. If it also comes back normal, then it would be highly unlikely that multiple myeloma or one of its precursors (MGUS or smoldering myeloma) would be afflicting you.

Good luck and let us know the results!

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Should I keep looking into possibly having myeloma?

by ThePride on Wed Jul 06, 2016 12:29 pm

Thank you. Appointment at Roswell Park in Buffalo in early August. I'll check in after that.

ThePride

Re: Should I keep looking into possibly having myeloma?

by lys2012 on Thu Jul 07, 2016 12:56 pm

Hi,

It's hard for us to comment on your symptoms and blood works as we are not doctors, just patients going through myeloma!

I agree that the mildly out of range blood counts don't sound like they would meet the "CRAB" symptoms. The A in CRAB means anemia at least 2 points out of norm – 10 or below, I believe.

That said, I live with a slight anemia, some times worse than others, and even mild levels can make you feel tired, breathless on stairs, etc. Can you explore other causes and treat that? (Diet related, take iron, etc.)

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32


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