Hi my name is Diane and yesterday I visited an oncologist because a routine blood test showed I have elevated abnormal bone marrow protein. The oncologist said, 'You have a value of 1 for protein M and that is why we will be doing further tests (x-rays, blood, 24-hr urine, etc.) . You are not anemic and all other tests are normal. I asked if I should continue my daily hiking workouts and she said yes.
I am being tested for multiple myeloma and want to know what will be the next step? Don't have any bone pain yet, but don't know what to expect.
I am 56 and was in good health until the blood test. Is a value of 1 really awful for this cancer? I can't find any charts that discuss it.
Thanks,
Diane
Forums
Re: what does a value of 1 mean for M protein?
Hi Diane,
I DEFINITELY am not an expert, but I don't think I'm going too far out on a limb when I say that a so-called "m-spike" of 1 is not a high value.
In fact, I believe a large majority of myeloma patients usually are diagnosed with an m-spike that is greater than 3.
So, no, a value of 1 is by no means high.
At the same time, a value of 1 is higher than normal, which is why your oncologist is doing additional tests. There are a number of reasons why the proteins might be higher than normal, and your oncologist is trying to pin down the exact reason.
One possible explanation is that you have something called "monoclonal gammopathy of undetermined significance", or "MGUS". My understanding is that this is just a fancy way of saying you have higher than normal protein levels in your blood with no bad impact elsewhere in your body and no clear explanation.
I think researchers now believe MGUS is basically the first early stage of myeloma, although many people with MGUS may never actually advance to having myeloma.
Good luck! I would be interested in knowing what your oncologist says. Could you let us know when you get your results?
I DEFINITELY am not an expert, but I don't think I'm going too far out on a limb when I say that a so-called "m-spike" of 1 is not a high value.
In fact, I believe a large majority of myeloma patients usually are diagnosed with an m-spike that is greater than 3.
So, no, a value of 1 is by no means high.
At the same time, a value of 1 is higher than normal, which is why your oncologist is doing additional tests. There are a number of reasons why the proteins might be higher than normal, and your oncologist is trying to pin down the exact reason.
One possible explanation is that you have something called "monoclonal gammopathy of undetermined significance", or "MGUS". My understanding is that this is just a fancy way of saying you have higher than normal protein levels in your blood with no bad impact elsewhere in your body and no clear explanation.
I think researchers now believe MGUS is basically the first early stage of myeloma, although many people with MGUS may never actually advance to having myeloma.
Good luck! I would be interested in knowing what your oncologist says. Could you let us know when you get your results?
Re: What does a value of 1 mean for M protein?
Thanks Ricardo - Hard to find data about what is normal and different values. When I left the oncologist office, I felt certain I have this cancer because of the additional testing. Been so hard to sleep or even eat at times. Next week I have the total skeleton x-ray and more blood/urine testing. I like reading the personal stories, they give me hope. Thanks, Diane
Re: What does a value of 1 mean for M protein?
Hi Diane,
It's understandable that you're feeling nervous and want to know as soon as possible what the diagnosis is.
You said that you don't have any anemia and "all your other tests are normal." Can you explain what other tests have been done so far that you have the results of?
For myeloma, the usual requirements for confirming the disease are the so-called "CRAB" or "CRAB(I)" conditions:
It is natural to worry about what your doctor might find after all the tests are done. At the same time, for now, there really isn't much that you can do. I'm not even sure you have enough information right now to really do any reading that would be very helpful.
You will have to find the way to deal with this uncertainty that works best for you. No one here can really tell you what to do. But we are happy to help in whatever way we can.
Good luck!
It's understandable that you're feeling nervous and want to know as soon as possible what the diagnosis is.
You said that you don't have any anemia and "all your other tests are normal." Can you explain what other tests have been done so far that you have the results of?
For myeloma, the usual requirements for confirming the disease are the so-called "CRAB" or "CRAB(I)" conditions:
- Calcium (elevated calcium levels in the blood), which can lead to weakness, fatigue, and even confusion;
- Renal (kidney) problems, due to the higher calcium in the blood as well as other issues related to the myeloma; a symptom of this can be the need to urinate more frequently than usual
- Anemia, which often leads to fatigue
- Bone pain or bone lesions;
- Infections, such as pneumonia, occurring more often than usual.
It is natural to worry about what your doctor might find after all the tests are done. At the same time, for now, there really isn't much that you can do. I'm not even sure you have enough information right now to really do any reading that would be very helpful.
You will have to find the way to deal with this uncertainty that works best for you. No one here can really tell you what to do. But we are happy to help in whatever way we can.
Good luck!
Re: What does a value of 1 mean for M protein?
Dear Diane,
Ricardo is spot on. An M protein value of 1 is not high and the absence of other worrisome findings thus far is a good start! A normal M protein level, though, is 0. The most likely diagnosis is MGUS (that is where I am putting my money), but the other testing is certainly warranted to ensure that there is nothing we need to worry about. MGUS can evolve into myeloma but it does not in most instances. For all comers, the likelihood of MGUS turning into myeloma or some other related disease (for example, amyloidosis) is 1% per year. So, if you live for 40 years, your risk is 40%, 30 years, 30%, etc. There are additional tests (serum free light chain testing) that can help better predict the lieklihood of MGUS evolution.
Let us know how the testing comes out. Good luck!
Pete V.
Ricardo is spot on. An M protein value of 1 is not high and the absence of other worrisome findings thus far is a good start! A normal M protein level, though, is 0. The most likely diagnosis is MGUS (that is where I am putting my money), but the other testing is certainly warranted to ensure that there is nothing we need to worry about. MGUS can evolve into myeloma but it does not in most instances. For all comers, the likelihood of MGUS turning into myeloma or some other related disease (for example, amyloidosis) is 1% per year. So, if you live for 40 years, your risk is 40%, 30 years, 30%, etc. There are additional tests (serum free light chain testing) that can help better predict the lieklihood of MGUS evolution.
Let us know how the testing comes out. Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: What does a value of 1 mean for M protein?
Thank you so much Ricardo and Dr. Peter V. for your responses.
Yes, I will have the total skeleton test, 24-hr urine, and blood testing. My oldest son was born with special needs (rare craniofacial abnormality) and has had 30 involved surgeries. I am so used to visiting his team clinics / doctors and feeling fully informed and with hope when we left. Plus, lots of great support groups for these rare facial abnormalities. But, the appointment with the oncologist was the opposite; first the NA said, 'lots of our patients are cured of breast cancer' (don't have breast cancer) and then was told to get ready for an involved physical (lasted 2 minutes) with the doctor, saying lymph-spleen good, heart-lungs good, no water retention, and no bruising - get dressed. She said we will be testing for the multiple myeloma and take these tests. You are not anemic, WBC, kidney, and liver tests are normal (assuming standard). I asked if there was a support group here in Phoenix and her office said no, just follow the instructions.
Because my son has had so many surgeries, I communicate with his team doctors / nurses / surgeons via email. I asked what they would recommend. My son's doctors recommended second opinions and said our insurance allows Mayo, MD Anderson, and Cancer Centers of America, all here in AZ if multiple myeloma. One medical support sent an article about the Mayo MGUS program. Another doctor whose wife has cancer recommended another oncologist if not comfortable with current one. Guess I'm used to team supports and solid medical documentation for any type of testing.
Will inform this wonderful forum of the results on December 1st. Thank you, Diane
Yes, I will have the total skeleton test, 24-hr urine, and blood testing. My oldest son was born with special needs (rare craniofacial abnormality) and has had 30 involved surgeries. I am so used to visiting his team clinics / doctors and feeling fully informed and with hope when we left. Plus, lots of great support groups for these rare facial abnormalities. But, the appointment with the oncologist was the opposite; first the NA said, 'lots of our patients are cured of breast cancer' (don't have breast cancer) and then was told to get ready for an involved physical (lasted 2 minutes) with the doctor, saying lymph-spleen good, heart-lungs good, no water retention, and no bruising - get dressed. She said we will be testing for the multiple myeloma and take these tests. You are not anemic, WBC, kidney, and liver tests are normal (assuming standard). I asked if there was a support group here in Phoenix and her office said no, just follow the instructions.
Because my son has had so many surgeries, I communicate with his team doctors / nurses / surgeons via email. I asked what they would recommend. My son's doctors recommended second opinions and said our insurance allows Mayo, MD Anderson, and Cancer Centers of America, all here in AZ if multiple myeloma. One medical support sent an article about the Mayo MGUS program. Another doctor whose wife has cancer recommended another oncologist if not comfortable with current one. Guess I'm used to team supports and solid medical documentation for any type of testing.
Will inform this wonderful forum of the results on December 1st. Thank you, Diane
Re: What does a value of 1 mean for M protein?
Hi -
Today I visited the oncologist and she said I have an M spike. In early October, the M spike was 1 g/dL, and now it is 1.5 g/dL. Everything else was normal; 34 body x-rays, immunoglobulins, WWCs (lower end), RBCs, 24-hour urine test (no proteins or calcium), and kidney function.
She wants to do a bone marrow aspiration. I asked what I have and she said, "I don't know - it could be MGUS or smoldering multiple myeloma - that is why it is important to assess the marrow.' It can be smoldering for years and then develop into multiple myeloma. If multiple myeloma, will be staged. She said sometimes multiple myeloma in stage 1 doesn't always involve treatment, but eventually needs treatment. Wow, in shock.
I asked if I should exercise (hike daily) and she said yes, your bones are good. Asked if I should alter my eating (been a vegetarian for decades) and she said no. I am very fearful that I have multiple myeloma because of the M spike. Why else would it go up? What else would it mean when the spike keeps going up?
I live in Phoenix AZ. Can anyone recommend a treatment center or a support group? I'm leaning to the Mayo for the bone marrow aspiration.
Thanks, Diane
Today I visited the oncologist and she said I have an M spike. In early October, the M spike was 1 g/dL, and now it is 1.5 g/dL. Everything else was normal; 34 body x-rays, immunoglobulins, WWCs (lower end), RBCs, 24-hour urine test (no proteins or calcium), and kidney function.
She wants to do a bone marrow aspiration. I asked what I have and she said, "I don't know - it could be MGUS or smoldering multiple myeloma - that is why it is important to assess the marrow.' It can be smoldering for years and then develop into multiple myeloma. If multiple myeloma, will be staged. She said sometimes multiple myeloma in stage 1 doesn't always involve treatment, but eventually needs treatment. Wow, in shock.
I asked if I should exercise (hike daily) and she said yes, your bones are good. Asked if I should alter my eating (been a vegetarian for decades) and she said no. I am very fearful that I have multiple myeloma because of the M spike. Why else would it go up? What else would it mean when the spike keeps going up?
I live in Phoenix AZ. Can anyone recommend a treatment center or a support group? I'm leaning to the Mayo for the bone marrow aspiration.
Thanks, Diane
Re: What does a value of 1 mean for M protein?
Dear Diane,
Given the fact that the M spike has increased, I think the bone marrow biopsy would be an appropriate thing to do. As your physician pointed out, you have not suffered any organ damage from myeloma based on the testing done thus far, so a bone marrow will help distinguish MGUS from smoldering / asymptomatic myeloma in your case. The risk of progression to full blown myeloma is higher for those with smoldering myeloma than MGUS. For those with smoldering myeloma that is at higher risk of progressing to symptomatic myeloma, there are on-going clinical trials looking at early intervention with drugs like lenalidomide (Revlimid) to see if we can alter the natural course of the disease.
I would view the 0.5 mg/dL increase with caution. These tests can bounce around a bit. I would repeat it relatively soon to give you a better sense if it is truly on the rise. Plus, an M protein of 1.5 g/dL is on the low side of things. A bone marrow biopsy could very well show just MGUS. If it does wind up being MGUS, I would watch things more closely than we usually do given the 0.5 increase you pointed out.
The Scottsdale Mayo group is terrific and would be a terrific resource in your area.
Good luck!
Pete V.
Given the fact that the M spike has increased, I think the bone marrow biopsy would be an appropriate thing to do. As your physician pointed out, you have not suffered any organ damage from myeloma based on the testing done thus far, so a bone marrow will help distinguish MGUS from smoldering / asymptomatic myeloma in your case. The risk of progression to full blown myeloma is higher for those with smoldering myeloma than MGUS. For those with smoldering myeloma that is at higher risk of progressing to symptomatic myeloma, there are on-going clinical trials looking at early intervention with drugs like lenalidomide (Revlimid) to see if we can alter the natural course of the disease.
I would view the 0.5 mg/dL increase with caution. These tests can bounce around a bit. I would repeat it relatively soon to give you a better sense if it is truly on the rise. Plus, an M protein of 1.5 g/dL is on the low side of things. A bone marrow biopsy could very well show just MGUS. If it does wind up being MGUS, I would watch things more closely than we usually do given the 0.5 increase you pointed out.
The Scottsdale Mayo group is terrific and would be a terrific resource in your area.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: What does a value of 1 mean for M protein?
Thank you Dr. V
Yes, I am very concerned with how quickly this M spike has started. In June had my usual thyroid panels and there was no M spike, but a change with T4, so my doctor requested an October reassessment and did another blood panel, but this time there was an M spike of 1.0. Last week had the oncologist blood panel and the spike was 1.5. I'm trying to be positive, but keep thinking something must be going on if I had a 50% increase M spike within 6-7 weeks.
Is it typical of MGUS to have spikes?
With smoldering myeloma, can it remain stable? If so, for how long?
I take other drugs (Snthyroid and levostatin). My doctor told me years ago that I have markers for an autoimmune of hypothyroidism (Hashimoto?).
The Mayo contacted me on Friday and will do an application interview on Monday to determine if I meet the criteria to visit their oncology clinic. Since they were involved with the identification of M protein, I assume they will see me.
Again, I wasn't feeling sick at all - very active, hiking, and sleeping 5-7 hours / night. My degrees are in clinical nutrition and I have always eaten well - vegetarian, mostly fruits/vegetables, whole grains, nuts, etc. Shocking how quickly your health status can change.
Thanks for your time, I appreciate it.
- Diane
Yes, I am very concerned with how quickly this M spike has started. In June had my usual thyroid panels and there was no M spike, but a change with T4, so my doctor requested an October reassessment and did another blood panel, but this time there was an M spike of 1.0. Last week had the oncologist blood panel and the spike was 1.5. I'm trying to be positive, but keep thinking something must be going on if I had a 50% increase M spike within 6-7 weeks.
Is it typical of MGUS to have spikes?
With smoldering myeloma, can it remain stable? If so, for how long?
I take other drugs (Snthyroid and levostatin). My doctor told me years ago that I have markers for an autoimmune of hypothyroidism (Hashimoto?).
The Mayo contacted me on Friday and will do an application interview on Monday to determine if I meet the criteria to visit their oncology clinic. Since they were involved with the identification of M protein, I assume they will see me.
Again, I wasn't feeling sick at all - very active, hiking, and sleeping 5-7 hours / night. My degrees are in clinical nutrition and I have always eaten well - vegetarian, mostly fruits/vegetables, whole grains, nuts, etc. Shocking how quickly your health status can change.
Thanks for your time, I appreciate it.
- Diane
Re: What does a value of 1 mean for M protein?
Hi don't get ahead of yourself! How you are analyzing the M spike is not correct( i.e., it went up by 50 percent, so next time it will be 2). The way this test is run relies on some interpretation by the lab technician, so the results can vary slightly within a range from test to test. My doctor says with 1 point or so.
As the doctor said, 0 is normal, so one is abnormal, but it is not that high at the moment!
As the doctor said, 0 is normal, so one is abnormal, but it is not that high at the moment!
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