Hello,
I am a 28 year old male who is new to this whole multiple myeloma disease. This past Friday my primary care doctor send me to a place called The Hope Center For Cancer Care after several tests came back abnormal. For the most part there was some explanation that came with the results but this test is confusing me because I have no idea what it all means. Here are my results:
Urine Protein Electrophoresis 24 Hour
Protein, Urine (mg/dL) = 66.7
Protein, Urine 24 Hour (mg/24H) = 516.9
Ur albumin (mg/24H = 122.1
Ur alpha 1 (mg/24H) = 7.5
Ur alpha 2 (mg/24H) = 60.3
Ur beta + (overlap band #1) (mg/24H) = 290.8
Ur gamma + (Band 2) (mg/24H) = 36.2
M-Spike (Band 2) (mg/24H) = 14.5
% Ur albumin = 23.6
% Ur alpha 1 = 1.4
% Ur alpha 2 = 11.7
% Ur beta + (band #1 overlap) = 56.3
% Ur gamma + band #2 = 7.0
% M-Spike (band #2) = 2.8
My other tests show IgG lambda + free lambda monoclonal proteins are present. My total IgG value was 6,631. The standard range is 700-1,600.
I have been spending a lot of time researching to try and figure out what this all means for my own understanding. The cancer doctor said it is multiple myeloma and proceeded to do a bone marrow biopsy and took more blood along with another 24-hour urine test. I also need to get x-rays and an MRI done as well as take a trip to The Cleveland Clinic and I am not sure why. I go back in a couple days and am so lost as to what to ask and what to expect.
Other than my question as to what those results mean, what questions do you wish you would have asked at your first few appointments? He mentioned having siblings tested in regards to a future bone marrow transplant and he also went over several different treatment options. For those who have gone through all of this, what was it like? How long were you unable to work or do normal life activities? I have a son who is going to turn 7 and I do not want him to know just yet, I do not even know how to tell him.
Could all of my blood tests and urine tests somehow be false positives? I was doing this most recent urine collection and was wondering if my liquid intake would dilute the results? I am a very thirsty person and drink a ton of liquids and of course pee every half hour or so. It is as if liquids go right through me! Among other issues I have been having.
I know I have asked a lot of questions but any experience, advice, or anything I would appreciate. I just do not know what to expect and am sort of in disbelief at the moment.
Thank you!
Forums
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rustedashes - Name: Eric
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 18, 2014 (Officially)
- Age at diagnosis: 28
Re: Urine protein electrophoresis - understanding the result
Eric,
I am new to all of this and I have the precursor condition, MGUS. So I don't have a lot of hard science input for you. But I do want to let you know that I am glad you have found these forums and I hope that someone will respond with some good information. Sometimes, too, physicians will respond to posts.
As you are aware, many of these lab tests can be complicated and difficult to understand.
It appears you have an M-spike detectable in the urine and serum. What I don't quite understand is if you have two M-spikes? Regardless, it does look like your numbers are quite elevated. That being the case, I believe the Cleveland Clinic is an excellent place to go for consult and treatment. You really want to go with those clinicians who are experts in the field of myeloma as treatment approaches vary by individual and newer treatments become available frequently.
Here is a link for the Cleveland Clinic:
http://my.clevelandclinic.org/cancer/departments-centers/hematologic-oncology-blood-disorders/default.aspx
On a personal note, I two have a 7 year old child. I would not worry about telling your child too much at this time. If you have a lot of time at the doctor/hospital right now, you can tell him you are sick and the doctors are trying to make you feel better. But I found for me, my worry (when I didn't know yet what my diagnosis was) was that I would not be available to my children in the way I wanted to. Part of that had more to do with my wanting to be supermom. When I realized that, I realized my kids just want to know that I love them and I'll do everything I can to be around.
That's why going to the best possible doctors and hospitals who regularly treat multiple myeloma is the best course of action to take.
I hope that you will find some peace in this difficult journey.
I am new to all of this and I have the precursor condition, MGUS. So I don't have a lot of hard science input for you. But I do want to let you know that I am glad you have found these forums and I hope that someone will respond with some good information. Sometimes, too, physicians will respond to posts.
As you are aware, many of these lab tests can be complicated and difficult to understand.
It appears you have an M-spike detectable in the urine and serum. What I don't quite understand is if you have two M-spikes? Regardless, it does look like your numbers are quite elevated. That being the case, I believe the Cleveland Clinic is an excellent place to go for consult and treatment. You really want to go with those clinicians who are experts in the field of myeloma as treatment approaches vary by individual and newer treatments become available frequently.
Here is a link for the Cleveland Clinic:
http://my.clevelandclinic.org/cancer/departments-centers/hematologic-oncology-blood-disorders/default.aspx
On a personal note, I two have a 7 year old child. I would not worry about telling your child too much at this time. If you have a lot of time at the doctor/hospital right now, you can tell him you are sick and the doctors are trying to make you feel better. But I found for me, my worry (when I didn't know yet what my diagnosis was) was that I would not be available to my children in the way I wanted to. Part of that had more to do with my wanting to be supermom. When I realized that, I realized my kids just want to know that I love them and I'll do everything I can to be around.
That's why going to the best possible doctors and hospitals who regularly treat multiple myeloma is the best course of action to take.
I hope that you will find some peace in this difficult journey.
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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: Urine protein electrophoresis - understanding the result
Hi Eric,
Toni gave you a great first reply. I just want to expand on a few things. A diagnosis of multiple myeloma is often surprising and always pretty scary. There are lots of test results to interpret and a ton to learn quickly. You are doing the right thing by doing some research and learning from that! The Myeloma Beacon is a great resource, as you've already discovered. The International Myeloma Foundation is another good resource. They have a publication, "Myeloma Patient Handbook," that I strongly recommend. It has a lot of important information packed into one place.
In reading my next comments, please keep in mind that I am not a physician.
Based on the results you have provided so far, you would be characterized as having MGUS (monoclonal gammopathy of undetermined significance). If the results of your bone marrow biopsy indicate that you have >=10% myeloma cells in your bone marrow, then you'd be classified as having smoldering (or asymptomatic) myeloma. Then, if you have elevated calcium OR you have elevated creatinine OR you have anemia OR your x-rays and/or MRI show some bone damage (these are the "CRAB" symptoms), you would be diagnosed as having symptomatic myeloma. Typically, now only symptomatic myeloma is treated. All of this is explained better in the IMF handbook I mentioned.
Do not worry about getting your siblings tested to see if they are a bone marrow donor match for you. That kind of a transplant is an allogenic (from someone else) transplant. That is rarely used in multiple myeloma cases, especially as a first-line therapy. More often, an autologous stem cell transplant is used, where your own stem cells are used.
Finally, I want to second one of Toni's comments - if at all possible get treated by a myeloma specialist, and at a place like the Cleveland Clinic. Multiple myeloma is a fairly rare disease, but one where there is a tremendous amount of active research. So there is a lot of progress in new treatments. You want to be treated by someone who sees lots of myeloma cases and who keeps up to date on the latest research.
As you've already discovered through this web site, you are not alone. Best of luck to you. Please keep us posted on how things go for you.
Mike
Toni gave you a great first reply. I just want to expand on a few things. A diagnosis of multiple myeloma is often surprising and always pretty scary. There are lots of test results to interpret and a ton to learn quickly. You are doing the right thing by doing some research and learning from that! The Myeloma Beacon is a great resource, as you've already discovered. The International Myeloma Foundation is another good resource. They have a publication, "Myeloma Patient Handbook," that I strongly recommend. It has a lot of important information packed into one place.
In reading my next comments, please keep in mind that I am not a physician.
Based on the results you have provided so far, you would be characterized as having MGUS (monoclonal gammopathy of undetermined significance). If the results of your bone marrow biopsy indicate that you have >=10% myeloma cells in your bone marrow, then you'd be classified as having smoldering (or asymptomatic) myeloma. Then, if you have elevated calcium OR you have elevated creatinine OR you have anemia OR your x-rays and/or MRI show some bone damage (these are the "CRAB" symptoms), you would be diagnosed as having symptomatic myeloma. Typically, now only symptomatic myeloma is treated. All of this is explained better in the IMF handbook I mentioned.
Do not worry about getting your siblings tested to see if they are a bone marrow donor match for you. That kind of a transplant is an allogenic (from someone else) transplant. That is rarely used in multiple myeloma cases, especially as a first-line therapy. More often, an autologous stem cell transplant is used, where your own stem cells are used.
Finally, I want to second one of Toni's comments - if at all possible get treated by a myeloma specialist, and at a place like the Cleveland Clinic. Multiple myeloma is a fairly rare disease, but one where there is a tremendous amount of active research. So there is a lot of progress in new treatments. You want to be treated by someone who sees lots of myeloma cases and who keeps up to date on the latest research.
As you've already discovered through this web site, you are not alone. Best of luck to you. Please keep us posted on how things go for you.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Urine protein electrophoresis - understanding the result
Mike and Toni,
Thanks for the quick replies. They helped out a lot and Mike, I looked at that handbook you were talking about which was very informative.
My next doctor appointment was actually rescheduled so I will be in limbo for another week. But it is probably a good thing since this will allow for all of the test results to come back in time for my next appointment. The MRI and xrays have not been scheduled yet, I just turned in my second 24 hour urine collection this morning and of course at my first appointment my doctor took the bone marrow as well as more blood and urine that day.
I think I have been the most positive one out of those who know about what's going on with me. Possibly because I am in a state of disbelief but I am anxious to have these final results and then see what happens next. I've had so many tests these past few months.
My doctor sounded about as positive as one could be that it is multiple myeloma based upon other tests and factors that I did not mention above. But like he and you have said, there is always the possibility that it could be something else which I assume this last round of tests will be able to better tell for sure. Based upon other bloodwork I do show anemia. In fact my fatigue and tiredness was what prompted my initial visit to my primary care doctor who ordered the bloodwork that showed the anemia but the high protein as well. Which eventually led me to right now. I do not really understand any of the test results other than when doctors from the lab left comments. I did see the trend of more protein with each test which were all spread out about a month apart. Other stuff was low in other tests, some things were normal, and somethings may have been high but I am unsure. My memory sometimes is not the most reliable.
About a year ago I was in the hospital with pneumonia and SIRS. I wanted to ask my doctor if that could have somehow been connected to this. It was unexplainable and they never knew the cause.
So I guess it is a waiting game currently and I will just have to see what the doctor says. I am doing well overall though and will probably be asking about or reading up on other people's experiences on here a lot now that I have found this forum. I have probably forgotten most of what I wanted to say in this response so I may reply to my reply if I remember. Thank you!
Eric
Thanks for the quick replies. They helped out a lot and Mike, I looked at that handbook you were talking about which was very informative.
My next doctor appointment was actually rescheduled so I will be in limbo for another week. But it is probably a good thing since this will allow for all of the test results to come back in time for my next appointment. The MRI and xrays have not been scheduled yet, I just turned in my second 24 hour urine collection this morning and of course at my first appointment my doctor took the bone marrow as well as more blood and urine that day.
I think I have been the most positive one out of those who know about what's going on with me. Possibly because I am in a state of disbelief but I am anxious to have these final results and then see what happens next. I've had so many tests these past few months.
My doctor sounded about as positive as one could be that it is multiple myeloma based upon other tests and factors that I did not mention above. But like he and you have said, there is always the possibility that it could be something else which I assume this last round of tests will be able to better tell for sure. Based upon other bloodwork I do show anemia. In fact my fatigue and tiredness was what prompted my initial visit to my primary care doctor who ordered the bloodwork that showed the anemia but the high protein as well. Which eventually led me to right now. I do not really understand any of the test results other than when doctors from the lab left comments. I did see the trend of more protein with each test which were all spread out about a month apart. Other stuff was low in other tests, some things were normal, and somethings may have been high but I am unsure. My memory sometimes is not the most reliable.
About a year ago I was in the hospital with pneumonia and SIRS. I wanted to ask my doctor if that could have somehow been connected to this. It was unexplainable and they never knew the cause.
So I guess it is a waiting game currently and I will just have to see what the doctor says. I am doing well overall though and will probably be asking about or reading up on other people's experiences on here a lot now that I have found this forum. I have probably forgotten most of what I wanted to say in this response so I may reply to my reply if I remember. Thank you!
Eric
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rustedashes - Name: Eric
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 18, 2014 (Officially)
- Age at diagnosis: 28
Re: Urine protein electrophoresis - understanding the result
Eric,
I think you're getting a really good grasp of the situation thus far. I couldn't tell from your first post what exactly your M-spike was. If it's 2.8 then it's getting up there and they are doing all the necessary tests to accurately assess your condition and appropriate treatment. But I'm not familiar with the values for an m-spike from the urine.
It sounds like you were very ill with pneumonia and SIRS which, coupled with the anemia certainly points to something along the myeloma line.
Like you, my memory is the pits. I know I know why all of this is true, I just can't remember why so I can't explain it. I'm hoping someone else more knowledgeable will explain why sometimes anemia or infections will start happening.
What I've found from these forums are a lot of smart people who have had to get even smarter learning all these tests and then all the treatment options! So as soon as you get more test results, let us know so we too can have a better understanding of what you are going through.
There's sooooo much information on here! Glad you found the booklet - great place to start.
I think you're getting a really good grasp of the situation thus far. I couldn't tell from your first post what exactly your M-spike was. If it's 2.8 then it's getting up there and they are doing all the necessary tests to accurately assess your condition and appropriate treatment. But I'm not familiar with the values for an m-spike from the urine.
It sounds like you were very ill with pneumonia and SIRS which, coupled with the anemia certainly points to something along the myeloma line.
Like you, my memory is the pits. I know I know why all of this is true, I just can't remember why so I can't explain it. I'm hoping someone else more knowledgeable will explain why sometimes anemia or infections will start happening.
What I've found from these forums are a lot of smart people who have had to get even smarter learning all these tests and then all the treatment options! So as soon as you get more test results, let us know so we too can have a better understanding of what you are going through.
There's sooooo much information on here! Glad you found the booklet - great place to start.
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Urine protein electrophoresis - understanding the result
Hi,
I am one of the myeloma doctors at the Cleveland Clinic and am very familiar with the Hope Center as we work with them quite a bit. I am also from the Youngstown / Warren area originally.
The lab studies that you have provided certainly bring up the possibility of myeloma. I agree with a bone marrow biopsy and you also need bone imaging (x-rays from head to toe) as well (unless i missed this).
If you need a contact number for us at the clinic, 216-444-7923. You can mention to them that you go my name from the Myeloma Beacon. There are 4 of us that see myeloma so you may have already been set up with someone else as well.
Let me know if you need anything.
Jason Valent
I am one of the myeloma doctors at the Cleveland Clinic and am very familiar with the Hope Center as we work with them quite a bit. I am also from the Youngstown / Warren area originally.
The lab studies that you have provided certainly bring up the possibility of myeloma. I agree with a bone marrow biopsy and you also need bone imaging (x-rays from head to toe) as well (unless i missed this).
If you need a contact number for us at the clinic, 216-444-7923. You can mention to them that you go my name from the Myeloma Beacon. There are 4 of us that see myeloma so you may have already been set up with someone else as well.
Let me know if you need anything.
Jason Valent
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Urine protein electrophoresis - understanding the result
I am so glad Dr. Valent posted on your thread. It sounds like you are under the care of very knowledgeable and experienced professionals.
All the best - Toni
All the best - Toni
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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: Urine protein electrophoresis - understanding the result
I am sorry to hear about your medical condition. The abnormal bands in your urine are indicative of monoclonal protein. Normally, we should not see any monoclonal protein band(s) on 24- hour urine protein electrophoresis. The abnormal M bands in your urine are reflective of high IgG levels in the blood. The kidneys are flushing out some of these abnormal proteins from your blood into the urine. It is important to undergo a complete work-up, including bone marrow biopsy and X-rays as suggested by your doctor. Meanwhile, it would be important to keep yourself well hydrated.
I wish you all the best.
I wish you all the best.
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Dr. Prashant Kapoor - Name: Prashant Kapoor, M.D.
Beacon Medical Advisor
Re: Urine protein electrophoresis - understanding the result
Erik you got some great advice here already. Myeloma is a complicated disease and it takes time and effort to educate yourself about the intricacies of diagnosis and treatment. As others have posted before me, it also is of utmost importance that you be treated by oncologists who specialize in the treatment of myeloma.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Urine protein electrophoresis - understanding the result
Thanks everyone for the great replies and wealth of information. I would have liked to have
responded sooner, as I have been on this site daily, but responding from my phone makes it difficult.
My appointment was moved, so it has turned into a longer waiting game before seeing my doctor next, and I still need to get the X-ray and MRI done, so next Tuesday I will have some more information as to what the next move is.
The more I read, the more questions I have, though a lot are answered by just browsing through this forum. Other than that, not much to report at the moment. I have been sick this past week and it has been exhausting. I swear I have been sleeping close to 20 hours straight. In fact, I missed work for 3 days because of it. Though I think I am feeling better now.
You will hear more from me soon. I may not always have something to post or any input, but I am sure here daily at least reading. So once again thanks for all the responses!
responded sooner, as I have been on this site daily, but responding from my phone makes it difficult.
My appointment was moved, so it has turned into a longer waiting game before seeing my doctor next, and I still need to get the X-ray and MRI done, so next Tuesday I will have some more information as to what the next move is.
The more I read, the more questions I have, though a lot are answered by just browsing through this forum. Other than that, not much to report at the moment. I have been sick this past week and it has been exhausting. I swear I have been sleeping close to 20 hours straight. In fact, I missed work for 3 days because of it. Though I think I am feeling better now.
You will hear more from me soon. I may not always have something to post or any input, but I am sure here daily at least reading. So once again thanks for all the responses!
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rustedashes - Name: Eric
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 18, 2014 (Officially)
- Age at diagnosis: 28
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