Getting an urgent appointment with a blood specialist as I received this of my hospital doctor:
2 paraproteins detected. Paraprotein in the beta 2 region is IgA kappa. Paraprotein in the gamma region is faint IgA.
C-REACTIVE PROTEIN
C-reactive protein 1 mg/L 0.0-5.0
ESR
Erythrocyte 66 mm/hr 1-20
IMMUNOGLOBULINS
Immunoglobulin G 6.3 g/L 0.4-2.3
Immunoglobulin A 14.4 g/L 0.7-4.0
Immunoglobulin M 1.5 g/L 0.4-2.3
PROTEIN ELECTROPHORESIS
Total protein 78 g/L 60-80
Albumin 44 g/L 35-50
Globulins 34 g/L 19-35
Alpha-1 globulins 3.8 % 3.1-6.1
Alpha-2 globulins 8.5 % 7.1-14.1
Beta-1 globulins 6.8 % 4.9-7.3
Beta-2 globulins 20.6 % 3.3-7.2
Gamma globulins 8.4 % 11.5-23.1
Discrete band in the beta region and faint discrete band in the gamma region. Paraprotein in beta region= 15 g/L [ 1.5 g/dL ] Band overlaps beta 2 zone. Quantitation artifactually increased by beta globulins. Paraprotein in the gamma region is too faint to quantitate ( <3g/L )
I apologise in advance for coming across as dim or offending people, as am new to this and rather terrified as live by myself and have no one to assist me in with info on this. My doctor seems to be more non aware of this information than me. Just told me to wait to see blood specialist. This was sent from my rheumo doctor as said something not correct with urine also.
Can anyone please help me on this?
Forums
Re: Not diagnosed - unsure of meaning of lab results
Hi Chrissy,
Welcome to the forum.
Try and take a deep breath regarding all this.
The fact that you have a modest paraprotein level (M-spike) means that you have some sort of a monoclonal gammopathy. More typical monoclonal gammopathies include MGUS, smoldering multiple myeloma and multiple myeloma...but there are other, rarer forms of the disease. Having two M-spikes versus one is not a concern and it happens from time to time.
However, I wouldn't jump to any conclusions about this being symptomatic multiple myeloma at this point. It could very well be a case of MGUS or smoldering multiple myeloma (which have fairly low risks for progressing to symptomatic multiple myeloma and many people go through life none the worse with this diagnosis and require no treatment).
The key lab tests you are going to want to get as a follow up include a serum free light chain assay, CBC and metabolic panel test. If you haven't had a 24 hour urine collection test, a doctor may also possibly suggest that test as well.
But what I would suggest doing after your get the above follow-up tests point is to seek out a top multiple myeloma specialist for the next appointment (unless you can schedule with one for your upcoming appointment). That specialist may then suggest some radiological imaging and/or a bone marrow biopsy after seeing all of your various lab test results.
Note that even though a blood doctor (hematolgist) may have some familiarity with monoclonal gammopathies and may have a few patients under his/her care, that does not necessarily make him/her a multiple myeloma specialist. If you let us know what city you are in, folks on this forum can suggest some specialists in your area.
Welcome to the forum.
Try and take a deep breath regarding all this.
The fact that you have a modest paraprotein level (M-spike) means that you have some sort of a monoclonal gammopathy. More typical monoclonal gammopathies include MGUS, smoldering multiple myeloma and multiple myeloma...but there are other, rarer forms of the disease. Having two M-spikes versus one is not a concern and it happens from time to time.
However, I wouldn't jump to any conclusions about this being symptomatic multiple myeloma at this point. It could very well be a case of MGUS or smoldering multiple myeloma (which have fairly low risks for progressing to symptomatic multiple myeloma and many people go through life none the worse with this diagnosis and require no treatment).
The key lab tests you are going to want to get as a follow up include a serum free light chain assay, CBC and metabolic panel test. If you haven't had a 24 hour urine collection test, a doctor may also possibly suggest that test as well.
But what I would suggest doing after your get the above follow-up tests point is to seek out a top multiple myeloma specialist for the next appointment (unless you can schedule with one for your upcoming appointment). That specialist may then suggest some radiological imaging and/or a bone marrow biopsy after seeing all of your various lab test results.
Note that even though a blood doctor (hematolgist) may have some familiarity with monoclonal gammopathies and may have a few patients under his/her care, that does not necessarily make him/her a multiple myeloma specialist. If you let us know what city you are in, folks on this forum can suggest some specialists in your area.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not diagnosed - unsure of meaning of lab results
Hello,
I thank you ever so kindly for your reply and response, as I was so terrified – especially due to the severe back, hip, and kidney pain, and feeling constantly sick. I live in London (Middlesex) and live near Ealing Hospital.
I truly cannot thank you enough for your time, as I am receiving no advice or anything from my surgery local doctor.
I thank you ever so kindly for your reply and response, as I was so terrified – especially due to the severe back, hip, and kidney pain, and feeling constantly sick. I live in London (Middlesex) and live near Ealing Hospital.
I truly cannot thank you enough for your time, as I am receiving no advice or anything from my surgery local doctor.
Re: Not diagnosed - unsure of meaning of lab results
Hi Chrissy,
Happy to help. I will leave it to other folks in the London area to comment on any recommendations for specialists.
If you are experiencing bone pain, getting imaged at your next appointment would be a smart move. I don't know what the imaging policy is in England, but the new general recommendations for initial diagnostic imaging is for an MRI or PET/CT (I would ask specifically for one of these tests if they don't offer it up). But if you are experiencing bone pain, a skeletal xray survey (still the most common imaging mode used in most countries) will also likely pick up any myeloma-related isues (should they exist).
Also, if you are experiencing kidney pain, I would go back and look at one of your metabolic panel tests and see what your creatinine level and eGFR has been doing. While you are at it, I would also check your calcium, red blood cell (RBC) and hemoglobin levels. You can find these values on older CBC and metabolic tests and they can provide additional, important clues.
Happy to help. I will leave it to other folks in the London area to comment on any recommendations for specialists.
If you are experiencing bone pain, getting imaged at your next appointment would be a smart move. I don't know what the imaging policy is in England, but the new general recommendations for initial diagnostic imaging is for an MRI or PET/CT (I would ask specifically for one of these tests if they don't offer it up). But if you are experiencing bone pain, a skeletal xray survey (still the most common imaging mode used in most countries) will also likely pick up any myeloma-related isues (should they exist).
Also, if you are experiencing kidney pain, I would go back and look at one of your metabolic panel tests and see what your creatinine level and eGFR has been doing. While you are at it, I would also check your calcium, red blood cell (RBC) and hemoglobin levels. You can find these values on older CBC and metabolic tests and they can provide additional, important clues.
Last edited by Multibilly on Wed Apr 06, 2016 2:29 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not diagnosed - unsure of meaning of lab results
Once again, thank you kindly for responding.
I have never been given any copies what so ever of any results. My own doctor was aware of these results 3 weeks ago but only doing something now as in yesterday by informing blood doctor in hospital. She did inform the blood doctor 2 weeks ago but informed them of not urgent.
I hope someone else from London would advise me of a good specialist in West London. X Very much appreciated indeed. x
I have never been given any copies what so ever of any results. My own doctor was aware of these results 3 weeks ago but only doing something now as in yesterday by informing blood doctor in hospital. She did inform the blood doctor 2 weeks ago but informed them of not urgent.
I hope someone else from London would advise me of a good specialist in West London. X Very much appreciated indeed. x
Re: Not diagnosed - unsure of meaning of lab results
You are legally entitled to all copies of your lab results in England. I would just contact the doctor's office and request copies of all your recent tests. I would also suggest getting in the habit of asking for copies of lab tests as you leave an appointment. Having your own copies of lab tests turns out to be quite helpful in sorting out just what is going on with other doctors and/or on forums like this one.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not diagnosed - unsure of meaning of lab results
Hello Chrissy,
You have received excellent advice from Multibilly, who is a tremendous asset to our community here.
I do not live in England, but perhaps this list of leading myeloma specialists from around the world – including specialists in the United Kingdom – will be of help to you.
If you use your web browser's search function to search the list for "London", you will find 2 or 3 myeloma specialists based in London.
As I understand it, the Royal Marsden formerly was really THE place to go for myeloma specialists in London. However, that was before Dr. Gareth Morgan and Dr. Faith Davies went to the U.S. I would still keep the Royal high on your list, if I were you, and I also would consider Parkside.
Good luck!
You have received excellent advice from Multibilly, who is a tremendous asset to our community here.
I do not live in England, but perhaps this list of leading myeloma specialists from around the world – including specialists in the United Kingdom – will be of help to you.
If you use your web browser's search function to search the list for "London", you will find 2 or 3 myeloma specialists based in London.
As I understand it, the Royal Marsden formerly was really THE place to go for myeloma specialists in London. However, that was before Dr. Gareth Morgan and Dr. Faith Davies went to the U.S. I would still keep the Royal high on your list, if I were you, and I also would consider Parkside.
Good luck!
Re: Not diagnosed - unsure of meaning of lab results
Just came back from hospital and was told it's multiple myeloma I have. Had the MRI and body xrays and getting a bone biopsy this coming Tuesday. Go back in 3 weeks to see what treatment I start.
Is this correct in leaving it another 3 weeks before treatment?
Maybe am just feeling sorry for myself as thought that was the MGUS stage. They found skull lesions.
Am I just worrying too much or they need time to figure out what type or strength of treatment I need?
Apologies in advance if I am just being a baby. Just terrified.
Is this correct in leaving it another 3 weeks before treatment?
Maybe am just feeling sorry for myself as thought that was the MGUS stage. They found skull lesions.
Am I just worrying too much or they need time to figure out what type or strength of treatment I need?
Apologies in advance if I am just being a baby. Just terrified.
Re: Not diagnosed - unsure of meaning of lab results
I see that you are still waiting on the results from the MRI and the bone marrow biopsy. Myeloma is usually slow moving and waiting 3 weeks is very normal to identify whether there are bone issues which will define whether treatment is needed.
The reason I mention the MRI is that my husband's initial x-ray showed a possible lesion on the skull and mild fracture on his L1/L2 vertebrae. This prompted us to get a PET scan, which happens to show no cancer activity. The lesion on the skull was in a place that could have been a venous lake (which is normal). The PET scan ruled out a bone lesion. The bone marrow test shows 10%, which officially puts him in smoldering territory.
I asked his doctor to give him a bone dex scan which shows that he has severe osteopenia in his back vertebrae. As a result he will be getting monthly Zometa infusions to build up his bone density. However, because his numbers are fairly low – M-spike 1.2 g/dL (12 g/L) and IgG 1800 (normal is up to 1560) – and the PET scan ruled out bone lesions, he is in a 'watch and wait' category. Your tests will give the doctor more information as to whether treatment is needed.
The reason I mention the MRI is that my husband's initial x-ray showed a possible lesion on the skull and mild fracture on his L1/L2 vertebrae. This prompted us to get a PET scan, which happens to show no cancer activity. The lesion on the skull was in a place that could have been a venous lake (which is normal). The PET scan ruled out a bone lesion. The bone marrow test shows 10%, which officially puts him in smoldering territory.
I asked his doctor to give him a bone dex scan which shows that he has severe osteopenia in his back vertebrae. As a result he will be getting monthly Zometa infusions to build up his bone density. However, because his numbers are fairly low – M-spike 1.2 g/dL (12 g/L) and IgG 1800 (normal is up to 1560) – and the PET scan ruled out bone lesions, he is in a 'watch and wait' category. Your tests will give the doctor more information as to whether treatment is needed.
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Not diagnosed - unsure of meaning of lab results
Hi Chrissy,
Sorry to hear about your diagnosis, but at least you know better what you are dealing with.
The instances where time is of the essence to initiate treatment is usually when one has severe complications from the disease, especially in the case of significantly compromised kidney function. That doesn't appear to be your situation.
In general, it's important to get a bone marrow biopsy before initiating any treatment since the results of the bone marrow biopsy will:
So, I would be happy that your doctor is being thorough rather than rushing you into treatment right away.
Let us know how things go and I wish you all the best with your treatment.
Sorry to hear about your diagnosis, but at least you know better what you are dealing with.
The instances where time is of the essence to initiate treatment is usually when one has severe complications from the disease, especially in the case of significantly compromised kidney function. That doesn't appear to be your situation.
In general, it's important to get a bone marrow biopsy before initiating any treatment since the results of the bone marrow biopsy will:
- Confirm if it is truly multiple myeloma or some other related disorder.
- Surface any potential genetic anomalies that will help determine the optimum choice of treatment drugs .
- Give the doctor a baseline of your bone marrow plasma percentage that will help the doctor see how well you respond to treatment over time.
So, I would be happy that your doctor is being thorough rather than rushing you into treatment right away.
Let us know how things go and I wish you all the best with your treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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