Hi,
My doctor just order the blood work for this type of cancer. Should I be concerned? Or is this normal?
I have lupus (systemic lupus erythematosus) and fibromyalgia. Is he just being cautious?
I am truly sorry for everyone having to deal with this disease.
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Re: Doctor just ordered myeloma-related blood work
Hey Deanna,
Welcome to the forum.
First off, I'm not a doc, so you obviously want to verify all this with your doc.
I guess my first reaction would be "why don't you just call your doc's office and ask him why he ordered the multiple myeloma tests?" Did your doctor say he found something in one of your blood tests such as elevated immunoglobulin (IgA, IgG, etc) or a rise in your total serum protein that caused him to suspect multiple myeloma? Or, are you having any new bone pain in your body such as in your spine or on one of your ribs?
My understanding is that it is pretty rare to have both SLE and multiple myeloma, so I'm guessing that something in your recent blood work or some new symptom must have caused him to want to do more tests?
Welcome to the forum.
First off, I'm not a doc, so you obviously want to verify all this with your doc.
I guess my first reaction would be "why don't you just call your doc's office and ask him why he ordered the multiple myeloma tests?" Did your doctor say he found something in one of your blood tests such as elevated immunoglobulin (IgA, IgG, etc) or a rise in your total serum protein that caused him to suspect multiple myeloma? Or, are you having any new bone pain in your body such as in your spine or on one of your ribs?
My understanding is that it is pretty rare to have both SLE and multiple myeloma, so I'm guessing that something in your recent blood work or some new symptom must have caused him to want to do more tests?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor just ordered myeloma-related blood work
As one who also has fibromyalgia, he may possibly be testing out of an abundance of caution. I have been treated for many years for fibromyalgia and when I presented to my doctor last spring with "different" pain and tingling, he sent me to a neurologist who then tested for monoclonal gammopathy. Fortunately, I am MGUS only.
I think for your two conditions sometimes it is prudent to rule things out. I do not know if that is why he is testing, but that might be one reason.
Best of health.
I think for your two conditions sometimes it is prudent to rule things out. I do not know if that is why he is testing, but that might be one reason.
Best of health.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Doctor just ordered myeloma-related blood work
Well, I have been having bone pain, joint in general, and spine pain. And when he ordered my regular lab tests without telling me he ordered the serum protein electrophoresis package lab work. And so when I came home I looked it up and saw that it was for this type of cancer.
Am I just freaking out over nothing?
Am I just freaking out over nothing?
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Deanna
Re: Doctor just ordered myeloma-related blood work
Deanna,
We ALL freak out when we find out our doctor is ordering that test!
I'm just grateful people on this forum were so patient, kind and understanding.
It is quite prudent of him to test for this. We don't know yet if you have a paraprotein, but even if you do, about 1-3% of Americans over 50 have this and may or may not know it. And of those with a paraprotein, a large portion of us are diagnosed with MGUS, monoclonal gammopathy of undetermined significance. And of that group of people, a significant portion never go on to develop smoldering myeloma or multiple myeloma.
Do you see where I'm going here? It doesn't help your anxiety while you wait for the test results, but if you can look at the facts, I hope it can give you some sense of peace.
But let's step back for a moment. Because you present with multiple symptoms (I presume, with ;upus as well as fibromyalgia) and you have these new-er (I presume as well) symptoms, which sometimes can be indicative of paraprotein (but they are also symptoms of hundreds of other conditions), your physician is doing the right thing by testing. Often this test rules out the presence of a paraprotein. Let's hope that is the case for you.
How has your lupus been lately? Is it well managed? What about your fibromyalgia? I was diagnosed with fibrosis ? when I was 25 and then in my early 30s, when there was more information about the condition, I was "confirmed" fibromyalgia by two rheumatologists.
I am now in my early 50s. And I started having bone pain and tingling in my legs and feet. It turns out I have a bunch of nerve root impingement likely causing the tingling. I also found that I was very low in vitamin D so some of my pain and fatigue has been improved by taking sufficient supplements. I still have the bone pain though, just not as bad.
When do you know your results? It usually takes about a week for them to come in. Keep us posted!
We ALL freak out when we find out our doctor is ordering that test!
I'm just grateful people on this forum were so patient, kind and understanding.It is quite prudent of him to test for this. We don't know yet if you have a paraprotein, but even if you do, about 1-3% of Americans over 50 have this and may or may not know it. And of those with a paraprotein, a large portion of us are diagnosed with MGUS, monoclonal gammopathy of undetermined significance. And of that group of people, a significant portion never go on to develop smoldering myeloma or multiple myeloma.
Do you see where I'm going here? It doesn't help your anxiety while you wait for the test results, but if you can look at the facts, I hope it can give you some sense of peace.
But let's step back for a moment. Because you present with multiple symptoms (I presume, with ;upus as well as fibromyalgia) and you have these new-er (I presume as well) symptoms, which sometimes can be indicative of paraprotein (but they are also symptoms of hundreds of other conditions), your physician is doing the right thing by testing. Often this test rules out the presence of a paraprotein. Let's hope that is the case for you.
How has your lupus been lately? Is it well managed? What about your fibromyalgia? I was diagnosed with fibrosis ? when I was 25 and then in my early 30s, when there was more information about the condition, I was "confirmed" fibromyalgia by two rheumatologists.
I am now in my early 50s. And I started having bone pain and tingling in my legs and feet. It turns out I have a bunch of nerve root impingement likely causing the tingling. I also found that I was very low in vitamin D so some of my pain and fatigue has been improved by taking sufficient supplements. I still have the bone pain though, just not as bad.
When do you know your results? It usually takes about a week for them to come in. Keep us posted!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Doctor just ordered myeloma-related blood work
Deanna,
In response to your comment "Well, I have been having bone pain, joint in general, and spine pain. And when he ordered my regular lab tests without telling me he ordered the serum protein electrophoresis package lab work. And so when I came home I looked it up and saw that it was for this type of cancer".
Note that an SPEP is used for several purposes, and not just as a test for the diagnosis of multiple myeloma.
http://www.webmd.com/a-to-z-guides/serum-protein-electrophoresis-spe
So, I would try not to be too anxious about all this and instead be thankful that you have what appears to be a good and conscientious doctor ... as Toni stated.
In response to your comment "Well, I have been having bone pain, joint in general, and spine pain. And when he ordered my regular lab tests without telling me he ordered the serum protein electrophoresis package lab work. And so when I came home I looked it up and saw that it was for this type of cancer".
Note that an SPEP is used for several purposes, and not just as a test for the diagnosis of multiple myeloma.
http://www.webmd.com/a-to-z-guides/serum-protein-electrophoresis-spe
Why It Is Done
Serum protein electrophoresis is most often done to help diagnose and monitor a wide variety of conditions. These include:
Some forms of cancer.
Problems with the kidneys or liver.
Problems with the immune system.
Conditions that lead to poor nutrition.
So, I would try not to be too anxious about all this and instead be thankful that you have what appears to be a good and conscientious doctor ... as Toni stated.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor just ordered myeloma-related blood work
Thank you everyone. Yes, I am being a little over worried. And trust me, I do not want anything more on my plate. I am being over cautious.
I was so focused on the serum protein electrophoresis test that I didn't see that he also did a test for CK, which test for dermatomyositis, Guillain-Barré syndrome, ALS, polymyositis. So yes, I think he is trying to rule things out.
I guess what has upset me is why he didn't just sit down and talk to me about it? Instead of me coming home and having to look it up myself and worrying about it for the next month until the test results come back and I go to my next doctor appointment.
But it does worry me that he is concerned there is something major going on.The symptoms I gave him were major pain in my spine and bone pain, tenderness to the touch, and severe joint pain. He did his usual poking around and felt my throat and did breath sounds. And immediately told his nurse for the test. But didn't tell me??
I will not freak out until the tests come back but I think it is a little fishy.
I was so focused on the serum protein electrophoresis test that I didn't see that he also did a test for CK, which test for dermatomyositis, Guillain-Barré syndrome, ALS, polymyositis. So yes, I think he is trying to rule things out.
I guess what has upset me is why he didn't just sit down and talk to me about it? Instead of me coming home and having to look it up myself and worrying about it for the next month until the test results come back and I go to my next doctor appointment.
But it does worry me that he is concerned there is something major going on.The symptoms I gave him were major pain in my spine and bone pain, tenderness to the touch, and severe joint pain. He did his usual poking around and felt my throat and did breath sounds. And immediately told his nurse for the test. But didn't tell me??
I will not freak out until the tests come back but I think it is a little fishy.
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Deanna
Re: Doctor just ordered myeloma-related blood work
I think we can all relate to your anxiety Deanna. We've all been there in one form or another as we got diagnosed. Let us know how your test results end up and if we can be of any help.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor just ordered myeloma-related blood work
Given the fact he had ordered other blood work, it is just one more test. Sounds like he is just being careful and not assuming anything.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
9 posts
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