Good morning,
I am not sure if this is the best place to post this message but figured someone would tell me if it wasn't. : )
My question is: What types of tests I can or should ask for to evaluate multiple myeloma or MGUS?
I had some blood work done about 6 weeks ago due to pain in back / legs / hips, fatigue, and occasional fever. Turns out I had a reactivation of mono / Epstein Barr. A few of the high / low results didn't trouble my GP but did cause some concern for me based on what we went through with my dad. I have listed the results below with my "score" and the reference ranges.
The reason I ask is that I have two relatives (father and paternal grandfather) who both died from multiple myeloma and, at the very least, I think I need to be vigilant about this.
Thank you in advance for any guidance!
Leukocytes:NCnc:Pt:Bld:Qn:Automated count 5.1 (4.8-10.0 1000/mm3)
RBC 3.52 (3.85-5.40 mill/cumm)
Hemoglobin:MCnc:Pt:Bld:Qn: 11.6 L (11.7-16.0 gm/dl)
Hematocrit:VFr:Pt:Bld:Qn:Automated count 34.5 L (36.0 - 47.0 %)
MCV 98.1 H (81.0-98.0 fl)
Urea nitrogen/Creatinine:MRto:Pt:Ser/Plas:Qn: 24 H (10-20)
Albumin/Globulin:MRto:Pt:Ser/Plas:Qn: 1.1 L (1.5-2.5)
Anion gap:SCnc:Pt:Ser/Plas:Qn: 3 L (5-15)
Forums
Re: Tests to check for MGUS / myeloma?
You would want to have a CBC panel, chem panel, immunoglobulin panel, serum free light chain test, serum protein electrophoresis (SPEP), 24 hour urine, and I don't remember what else.
I think that you are wise to ask for more extensive testing since you have 2 relatives who had myeloma. There are some familial connections in myeloma.
Nancy in Phila
I think that you are wise to ask for more extensive testing since you have 2 relatives who had myeloma. There are some familial connections in myeloma.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Tests to check for MGUS / myeloma?
Well this is good information. I live in a very small town so this site and the experiences shared here are invaluable. Thank you for your response.
-
mhda - Name: mhda
- Who do you know with myeloma?: father and grandfather
- Age at diagnosis: 69
Re: Tests to check for MGUS / myeloma?
mhda:
I just received a packet from the Mayo Clinic in which they ask me to participate in a study to determine the incidence of MGUS in relatives of myeloma patients. They want to see to what extent MGUS prevails in first degree relatives, i.e., siblings, children, parents. The whole thing is strictly voluntary and they ask for a small sample of serum from each participant.
I think this is an important investigative effort and you may want to learn more about it. The head of the project is Dr. Vincent Rajkumar at the Mayo Clinic in Rochester, Minnesota. I suspect that, if he hears that both your father and your grandfather had myeloma, it would be of considerable interest.
I just received a packet from the Mayo Clinic in which they ask me to participate in a study to determine the incidence of MGUS in relatives of myeloma patients. They want to see to what extent MGUS prevails in first degree relatives, i.e., siblings, children, parents. The whole thing is strictly voluntary and they ask for a small sample of serum from each participant.
I think this is an important investigative effort and you may want to learn more about it. The head of the project is Dr. Vincent Rajkumar at the Mayo Clinic in Rochester, Minnesota. I suspect that, if he hears that both your father and your grandfather had myeloma, it would be of considerable interest.
Last edited by mrozdav on Tue Mar 31, 2015 3:04 pm, edited 1 time in total.
Re: Tests to check for MGUS / myeloma?
Hi mhda,
I'm sorry to hear about your father and grandfather. Hopefully, whatever led them to have multiple myeloma hasn't been passed on to you.
To get a sense if you may be developing myeloma, you can look at your hemoglobin, calcium, and creatinine levels in blood tests. If your hemoglobin starts to trend downwards, going below the normal range, that could be a sign of myeloma (but also of many other things). Likewise, if your calcium or creatinine levels are becoming elevated, above the normal range, that, too, could be a sign.
If you sometimes have a quantitative immunoglobulins test run, it will report your IgG, IgA, and IgM immunoglobulin levels. In about 80 to 85 percent of myeloma patients, one of those immunoglobulins will be elevated. Sometimes, the other two will be depressed, in the low normal, or even below normal, range.
If you really want to thoroughly check for signs of multiple myeloma, you could have both serum and 24-hour urine electrophoresis and immunofixation tests run. The immunofixation tests will check to see whether you have a monoclonal protein in your blood or urine, and the electrophoresis tests will tell you how much monoclonal protein you have (if you have it).
These are not expensive tests, so having them run every year or two, given your situation – and particularly if you are seeing signs or symptoms of the disease – would seem reasonable.
To finalize a diagnosis of myeloma, doctors will usually order a skeletal xray or MRI, order testing of the free light chains in your blood, and also perform a bone marrow biopsy. But those probably would be done only if the other tests I've mentioned are showing signs of myeloma. (The xrays / MRIs might be done, however, if you're experiencing bone pain.)
It's easier to understand why these tests help in the tracking and diagnosis of multiple myeloma if you understand more about the disease and how it is diagnosed. The Wikipedia article about multiple myeloma, particularly the section on diagnosis, can be helpful in this regard.
Also, once you're more familiar with the disease, you may want to read this recent article about changes in the diagnostic criteria for multiple myeloma,
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
I hope this helps a bit, and, most of all, I hope all of this information turns out to be totally unnecessary for you to know!
Best of luck to you.
I'm sorry to hear about your father and grandfather. Hopefully, whatever led them to have multiple myeloma hasn't been passed on to you.
To get a sense if you may be developing myeloma, you can look at your hemoglobin, calcium, and creatinine levels in blood tests. If your hemoglobin starts to trend downwards, going below the normal range, that could be a sign of myeloma (but also of many other things). Likewise, if your calcium or creatinine levels are becoming elevated, above the normal range, that, too, could be a sign.
If you sometimes have a quantitative immunoglobulins test run, it will report your IgG, IgA, and IgM immunoglobulin levels. In about 80 to 85 percent of myeloma patients, one of those immunoglobulins will be elevated. Sometimes, the other two will be depressed, in the low normal, or even below normal, range.
If you really want to thoroughly check for signs of multiple myeloma, you could have both serum and 24-hour urine electrophoresis and immunofixation tests run. The immunofixation tests will check to see whether you have a monoclonal protein in your blood or urine, and the electrophoresis tests will tell you how much monoclonal protein you have (if you have it).
These are not expensive tests, so having them run every year or two, given your situation – and particularly if you are seeing signs or symptoms of the disease – would seem reasonable.
To finalize a diagnosis of myeloma, doctors will usually order a skeletal xray or MRI, order testing of the free light chains in your blood, and also perform a bone marrow biopsy. But those probably would be done only if the other tests I've mentioned are showing signs of myeloma. (The xrays / MRIs might be done, however, if you're experiencing bone pain.)
It's easier to understand why these tests help in the tracking and diagnosis of multiple myeloma if you understand more about the disease and how it is diagnosed. The Wikipedia article about multiple myeloma, particularly the section on diagnosis, can be helpful in this regard.
Also, once you're more familiar with the disease, you may want to read this recent article about changes in the diagnostic criteria for multiple myeloma,
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
I hope this helps a bit, and, most of all, I hope all of this information turns out to be totally unnecessary for you to know!
Best of luck to you.
Re: Tests to check for MGUS / myeloma?
Thanks to you both for taking the time to explain these tests to me. This site truly is a blessing to have such great people taking the time to help others.
Cheryl G, I hope this informaiton is totally not useful at all! : ) I'll read on it though....just in case!
mrozdov, how can I contact the doctor for the trial? I googled him but I assume I just need t o call hematology/oncology at Mayo and leave a message with my information and he can reach out to me if I am a good candidate for the trial. Sounds like it will yield some good information.
Again, thank you both for the responses. It means a lot to me!
Cheryl G, I hope this informaiton is totally not useful at all! : ) I'll read on it though....just in case!
mrozdov, how can I contact the doctor for the trial? I googled him but I assume I just need t o call hematology/oncology at Mayo and leave a message with my information and he can reach out to me if I am a good candidate for the trial. Sounds like it will yield some good information.
Again, thank you both for the responses. It means a lot to me!
-
mhda - Name: mhda
- Who do you know with myeloma?: father and grandfather
- Age at diagnosis: 69
Re: Tests to check for MGUS / myeloma?
mhda: I sealed the envelope with all the information in preparation for sending it out, but the address is: Mayo Clinic/ 200 1st St SW/ Rochester, MN 55902-9823. If you call Dr. Rajkumar's office and tell his secretary about your circumstances, I am sure that she will be able to assist you.
Re: Tests to check for MGUS / myeloma?
mrozdav,
I was able to locate a form to fill out online for Mayo and had one of the trial coordinators call me. She was very nice. I wouldn't be able to participate, but I do appreciate you letting me know about this. I hope the results will be able to be shared.
Thank you again! mhda
I was able to locate a form to fill out online for Mayo and had one of the trial coordinators call me. She was very nice. I wouldn't be able to participate, but I do appreciate you letting me know about this. I hope the results will be able to be shared.
Thank you again! mhda
-
mhda - Name: mhda
- Who do you know with myeloma?: father and grandfather
- Age at diagnosis: 69
Re: Tests to check for MGUS / myeloma?
Hello, mhda. Unless it is a private matter, can you tell us why you are unable to participate in the study? I am just curious as to whether the decision is Mayo's or strictly your own. If the former, what explanation did they give?
I am so stunned by the fact that both your father and grandfather succumbed to myeloma that I just cannot imagine why medical scientists would not be eager to look into this situation. I do realize, however, that they have their established protocols which must be followed.
I am so stunned by the fact that both your father and grandfather succumbed to myeloma that I just cannot imagine why medical scientists would not be eager to look into this situation. I do realize, however, that they have their established protocols which must be followed.
Re: Tests to check for MGUS / myeloma?
I don't mind at all.
The lady I spoke with had relayed the information to Dr. Rajmukar and, since I have no diagnosis, I would not be a good candidate.
Dr Rajkumar also relayed (through the coordinator) that there is no reason for me to be screened. I appreciated this information, but as a single mother of two young children, I think it's best to at least get a baseline established.
MHDA
The lady I spoke with had relayed the information to Dr. Rajmukar and, since I have no diagnosis, I would not be a good candidate.
Dr Rajkumar also relayed (through the coordinator) that there is no reason for me to be screened. I appreciated this information, but as a single mother of two young children, I think it's best to at least get a baseline established.
MHDA
-
mhda - Name: mhda
- Who do you know with myeloma?: father and grandfather
- Age at diagnosis: 69
11 posts
• Page 1 of 2 • 1, 2