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Blood work shows elevated monoclonal protein

by socalguy91387 on Sat Sep 05, 2015 12:29 pm

During a routine blood work up I had an elevated protein level of 9.4 g/dL. Due to this, my gp ordered more work and yesterday I was told I have elevated monoclonal protein. He was very calm and low key in explaining that it could run anywhere from "cancer" to Waldenstroms to something that might not be anything more than having to be monitored. He is referring me to a hematologist.

Of course I google monoclonal protein and feel like I've been hit over the head with a hammer. I'm 58, in great health and right now after seeing figures on life expectancy with multiple myeloma, feel like there is a clock ticking. I'm trying to be positive and my wife, God love her, is the "glass half full" member of our house, so she's saying just wait until we get more info.

We are leaving for our first trip to Europe tomorrow to celebrate our 25th anniversary, so I won't know anything more about the doctor's referral until we get back, but I'm pretty much in shock. I guess for now, my only question to the forum is, does an elevated monoclonal protein result ALWAYS amount to a diagnosis of either multiple myeloma, MGUS, or Waldenstroms? It just seems like everything I'm seeing indicates that at best, I have a precursor to cancer.

Any info from the forum would be appreciated and I'm glad to have found it. As I said, we will be traveling for the next week. I'll have internet access but might not be able to answer any questions, if there are any, until we get back. Just didn't want to be a newbie who comes in, asks a question, and then isn't heard from again.

Thanks again.

socalguy91387

Re: Blood work shows elevated monoclonal protein

by Multibilly on Sat Sep 05, 2015 2:59 pm

Socalguy,

I remember being in your position when I was first suspected of having some sort of monoclonal gammopathy based on only a couple of routine tests that didn't tell the whole story.

Your total protein is not super high, assuming a normal range of ~ 6.1 -8.1 g/dL. If the doc knows that your excess protein is monoclonal in nature, he must have also run and has the results of a serum protein electrophoresis and/or immunofixation test. Do you perchance have the printouts of those results?

If I were you, I would enjoy my anniversary and assume for now that it is MGUS and that it would indeed only require occasional monitoring and that you would never be any the worse for it. Also, keep in mind that patients with MGUS generally have no indications that they have the condition and and the risk of it progressing to symptomatic multiple myeloma is only about 1%/year.

Related conditions like Waldenstrom's macroglobulinemia are really pretty darn rare, so I also wouldn't be assuming that's the likely cause of the monoclonal protein at this early stage of diagnosis.

Enjoy Europe!

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Blood work shows elevated monoclonal protein

by socalguy91387 on Sat Sep 05, 2015 4:36 pm

Multibilly,

Thanks SO MUCH for just about the only positive thing I've seen online in the past 24 hours. To be honest, I was in such a state of shock when my doctor called that I neglected to ask for the actual test results. I'll do that when I get back from the trip. I'll take your words of encourage­ment with me and will post follow ups here when I return.

Thanks again!

socalguy91387

Re: Blood work shows monoclonal elevated monoclonal protein

by socalguy91387 on Tue Oct 06, 2015 3:52 pm

I posted a few weeks ago that a routine blood test found elevated protein (9.4) in my CBC test. Due to that, my doctor ordered more work and was told I have an elevated monoclonal protein.

He then referred me to a hematologist, who then ordered more work ups, scheduled a complete bone x-ray, and also on our follow-up visit to discuss blood work, he suggested we schedule a bone marrow biopsy.

Today I went in and had the bone marrow biopsy. Had Demerol (meperidine) before and there was no pain. Also got the results of the x-rays and blood work. X-rays were completely normal and I've included images of the blood work below.

We are going back in one week for results of the biopsy but, at this point, I'm pretty convinced I have multiple myeloma. I have no symptoms of any kind at this point.

Can anyone comment on these results? Thank you

BloodCounts.png
BloodCounts.png (55.26 KiB) Viewed 1666 times

MetabolicIGs1.png
MetabolicIGs1.png (66.35 KiB) Viewed 1666 times

MetabolicIGs2.png
MetabolicIGs2.png (46.81 KiB) Viewed 1666 times

socalguy91387

Re: Blood work shows elevated monoclonal protein

by Multibilly on Tue Oct 06, 2015 4:23 pm

Hi Socal guy,

Thanks for the follow-up.

Your IgM is very high and IgM type multiple myeloma is very rare. I'm not a doc, but if your doc hasn't mentioned it, he/she should also be testing for Waldenstrom's macroglobulinemia (WM) given your high IgM level.

There are some telltale signs that show up during the various bone marrow biopsy tests (visual inspection, flow cytometry, etc) that would help confirm whether WM may be in play. You may want to make sure that the doctor has informed the pathologist to be on the lookout for WM and associated complications while performing the bone marrow biopsy tests.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Blood work shows elevated monoclonal protein

by socalguy91387 on Tue Oct 06, 2015 5:24 pm

Thanks again for your input Mulitbilly. When we go back next week I'll follow up with the Waldenstrom macroglobulinemia suggestion. This has all been pretty freaky up to now and just trying to deal with it.

socalguy91387

Re: Blood work shows elevated monoclonal protein

by Sister In Law on Tue Oct 06, 2015 6:51 pm

Hi SocalGuy,

I understand your fears. You just want to hit the back button on this stuff and ignore it!!

My husband just had the bone marrow biopsy yesterday for the first time. Hurry and wait. He has myeloma in the family bad. His dad had the kappa light chain kind and was only treated with Alkeran and prednisone. He's alive yet 20 years later. But my husband's sister got myeloma and really sort of ignored her symptoms until she had full blown kidney failure and then the doctors started trying to figure her out. She also had amyloidosis in her heart and kidneys. It was a devastating thing for someone 50 years old. But she had a year of really weird symptoms which she ignored. I don't think any of her doctors would have figured it out anyway.

So at that time, my husband asked his doctor to check him for myeloma. The doctor did bloodwork, but not urine testing, so he missed the light chains in my husband's urine. It may have been there four years ago. We don't know. So now, my husband has all these symptoms like low blood pressure, neuropathy, nausea, and fatigue. So we are waiting and wondering what sort of ailment will be part of this monoclonal protein band in his urine.

We sympathize with you, but go and enjoy life. Think of my father-in-law who had bare bones treatment for myeloma and is alive and ornery as can be just 20 years later!!! No stem cell treatment!!! Will look forward to your updates. I am on here too early, but my panic button has been pressed and I sort of need others to get through my fears and concerns. There are so many diseases that a person can get and we all want our old lives back before we had them!!!

Update us all. My globulin and protein levels run out of whack sometimes if I am at all dehydrated. But I was tested and all was okay (several years back!). Ignorance is bliss.

Sister In Law
Name: Linda
Who do you know with myeloma?: Husband, sister, father-in-law

Re: Blood work shows elevated monoclonal protein

by socalguy91387 on Tue Oct 06, 2015 7:26 pm

Thanks sister in law. It for sure IS nerve wracking. I've lived such a healthy life and for the most part have taken care of myself so now this is just making my head spin. I keep going from one thought to another, some good, some bad.

I'll for sure post next week after I get the results of the biopsy.

socalguy91387

Re: Blood work shows elevated monoclonal protein

by socalguy91387 on Thu Oct 22, 2015 2:23 pm

After waiting 2 agonizing weeks for the results of my bone marrow biopsy, I've been diagnosed with Waldenström's macroglobulinemia (lymphoplasmacytic lymphoma). To say this has been like being hit by a freight train is an understatement. Right now my wife and I are just trying to accept this and try to get back to a normal routine.

I understand that this is a very slow growing malignancy and, as my doctor said, I could die from something else before this ever truly affects me, but considering there IS a median survival time­line, I'd prefer to not imagine dying of something before that timeline is near.

My doctor is taking a wait and monitor approach, which I concur with based on everything I've read about Waldenström's. So I'll be going back for another blood work up in 4 weeks and just take it from there.

I know this isn't a Waldenström's forum but wanted to at least update and thank those that answered my questions when this all first came up some weeks ago.

socalguy91387

Re: Blood work shows elevated monoclonal protein

by Cheryl G on Thu Oct 22, 2015 3:54 pm

Hi SoCalGuy,

I'm sorry to hear of your Waldenstrom's diagnosis. I hope that in your case it is, in fact, a VERY slow growing malignancy, and that effective treatments for it continue to be developed.

I also want to say that I appreciate your updating us on what you learned after you had a chance to have further testing done. We all can learn from the sort of feedback you provided, and it's always nice to hear that the forum has been helpful to someone such as yourself.

Good luck!

Cheryl G

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