I was diagnosed with Discoid Lupus, Systemic Lupus, RA and Raynaud's Syndrome about 10 years ago. About 4 years ago my Rheumatologist ran a test that I was unaware of. It showed that I had a monoclonal spike. She failed to tell me about it until almost a year later. I was in the process of relocating to the mainland, so she suggested I have my new doctor follow up.
I did, and the blood work showed the spike was still present. That doctor had me get a full body scan as a baseline, it showed a "boney island" on my left femur. So, doc had me scheduled with a hematologist, but I had to relocate again.
I've now been in the same location, same doctor for the past two and half years. All he's said is " we'll just keep an eye on your counts " which continue to go up. The doctor hasn't had me come back for over a year now, so I requested the tests from my general practitioner.
My M Protein=1.67 (range is 0 ), Total Protein=8.60 (range is 6.0-8.0), Gamma Fraction=2.05 (range is .53-1.26), Igg=2590 (range is 700.0-1600.0), in the liver function panel test the TP (?) = 9.8 (range is 6.3-8.2). To say the least I'm very concerned, worried and scared is more accurate. I was told that this can be multiple myeloma, so should this be a watch and wait situation? I am desperate for ANY feedback and or advice! Please !
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Re: Grateful new member - looking for answers and support
Hi 47!
I don't know if your other health conditions could be affecting your blood results but the fact that you have bone involvement and these labs would seem to indicate a problem. I don't think you should wait. I believe that you should probably have a bone marrow biopsy to confirm a diagnosis of myeloma. It seems like you need some more reactive doctors. I'm no expert but I would be on top of this. It might be helpful if people know what state you're in so they could make suggestions as to where you might be seen.
One step at a time. Try not to panic. If you do have myeloma, one good thing is that your M-protein is not really high. That being said, any M-spike should be considered something to be dealt with. You need to know what you're up against and if treatment at this time is warranted. You definitely don't want to wait until you have more bone damage or weakened organs.
Best wishes for good news.
I don't know if your other health conditions could be affecting your blood results but the fact that you have bone involvement and these labs would seem to indicate a problem. I don't think you should wait. I believe that you should probably have a bone marrow biopsy to confirm a diagnosis of myeloma. It seems like you need some more reactive doctors. I'm no expert but I would be on top of this. It might be helpful if people know what state you're in so they could make suggestions as to where you might be seen.
One step at a time. Try not to panic. If you do have myeloma, one good thing is that your M-protein is not really high. That being said, any M-spike should be considered something to be dealt with. You need to know what you're up against and if treatment at this time is warranted. You definitely don't want to wait until you have more bone damage or weakened organs.
Best wishes for good news.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Grateful new member - looking for answers and support
I want to echo all of Joy's comments, which are spot on. I would try to find an oncologist/hematologist that specializes in myeloma. Folks on this site can help you with recommendations if you let us know where you live.
I would definitely follow up with a bone marrow biopsy and the other tests outlined here to fully understand just what is going on
https://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1
Given that you have potential bone involvement, this would also warrant follow-up imaging and/or a biopsy to determine the nature of the "boney island". Your M-spike is reasonably low, but if you are symptomatic by virtue of having myeloma-related bone tumor(s), you definitely want to treat the underlying disease.
There's no reason to panic, but do take the time to seek out a doc that lives and breathes this disease. This is the single most important thing you can do for yourself.
I would definitely follow up with a bone marrow biopsy and the other tests outlined here to fully understand just what is going on
https://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1
Given that you have potential bone involvement, this would also warrant follow-up imaging and/or a biopsy to determine the nature of the "boney island". Your M-spike is reasonably low, but if you are symptomatic by virtue of having myeloma-related bone tumor(s), you definitely want to treat the underlying disease.
There's no reason to panic, but do take the time to seek out a doc that lives and breathes this disease. This is the single most important thing you can do for yourself.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Grateful new member - looking for answers and support
Nice to meet you, 47 ... although I'm sorry it has to be in such a situation.
It seems like your doctors are not completely clear what your diagnosis should be.
There are two diseases that are generally considered to be earlier phases of multiple myeloma: monoclonal gammopathy of undetermined significance (MGUS), which is the very earliest phase, and smoldering myeloma, which is the phase right before multiple myeloma.
There are two key differences between multiple myeloma and its earlier phases, MGUS and smoldering myeloma.
First, by definition, multiple myeloma has symptoms -- signs that the disease is causing problems for the body. To be classified as having multiple myeloma, you have to have at least one of what are known as the "CRAB" symptoms -- elevated Calcium in the blood; kidney (Renal) problems; Anemia; or Bone damage.
Second, almost all physicians believe multiple myeloma should be actively treated with one or more anti-myeloma drugs. In the case of MGUS and smoldering myeloma, on the other hand, the accepted practice until now was to NOT treat the diseases. This is because, particularly in the case of MGUS, many patients with the disease do not actually progress to the point where the disease causes symptoms.
In your case, it seems like the physician(s) responsible for your care have believed that your disease is not yet fully symptomatic. This seems a bit odd, as others have suggested, given the "boney island" that was found in your femur.
To help determine more clearly whether or not you really have multiple myeloma, you should look at your blood test results to see if you have signs of anemia or kidney problems.
Also, as others above have suggested, you should probably get a bone marrow biopsy. This will determine the percentage of plasma cells in your bone marrow, which is an important piece of information to know.
You can read more about the criteria to determine if your diagnosis is MGUS, smoldering myeloma, or multiple myeloma in the diagnostic criteria section of the Wikipedia article on myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Finally, I also want to support the advice that you should try to see a myeloma specialist at a major cancer center. Myeloma is a rare disease, so it is best diagnosed and treated by people who deal with it day in and day out.
Good luck to you, and please update us on your situation.
It seems like your doctors are not completely clear what your diagnosis should be.
There are two diseases that are generally considered to be earlier phases of multiple myeloma: monoclonal gammopathy of undetermined significance (MGUS), which is the very earliest phase, and smoldering myeloma, which is the phase right before multiple myeloma.
There are two key differences between multiple myeloma and its earlier phases, MGUS and smoldering myeloma.
First, by definition, multiple myeloma has symptoms -- signs that the disease is causing problems for the body. To be classified as having multiple myeloma, you have to have at least one of what are known as the "CRAB" symptoms -- elevated Calcium in the blood; kidney (Renal) problems; Anemia; or Bone damage.
Second, almost all physicians believe multiple myeloma should be actively treated with one or more anti-myeloma drugs. In the case of MGUS and smoldering myeloma, on the other hand, the accepted practice until now was to NOT treat the diseases. This is because, particularly in the case of MGUS, many patients with the disease do not actually progress to the point where the disease causes symptoms.
In your case, it seems like the physician(s) responsible for your care have believed that your disease is not yet fully symptomatic. This seems a bit odd, as others have suggested, given the "boney island" that was found in your femur.
To help determine more clearly whether or not you really have multiple myeloma, you should look at your blood test results to see if you have signs of anemia or kidney problems.
Also, as others above have suggested, you should probably get a bone marrow biopsy. This will determine the percentage of plasma cells in your bone marrow, which is an important piece of information to know.
You can read more about the criteria to determine if your diagnosis is MGUS, smoldering myeloma, or multiple myeloma in the diagnostic criteria section of the Wikipedia article on myeloma,
http://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Finally, I also want to support the advice that you should try to see a myeloma specialist at a major cancer center. Myeloma is a rare disease, so it is best diagnosed and treated by people who deal with it day in and day out.
Good luck to you, and please update us on your situation.
Re: Grateful new member - looking for answers and support
Hi 47&Kickin,
I agree with the other posts - see a myeloma specialist. Your m-spike of 1.67 (I am assuming that the units of measurement are g/dL) is relatively low. Some specialists will start treatment when the m-spike is ~ 3.0 g/dL or 30 g/L.
All the best,
Libby
I agree with the other posts - see a myeloma specialist. Your m-spike of 1.67 (I am assuming that the units of measurement are g/dL) is relatively low. Some specialists will start treatment when the m-spike is ~ 3.0 g/dL or 30 g/L.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Grateful new member - looking for answers and support
I'm by no means a doc, but I realized later that lupus can also cause lytic bone lesions (and low hemaglobin, just like multiple myeloma can). Just another reason that you would want to get to the bottom of just what is causing the "boney island". I would imagine that a biopsy of the island would tell you definitively. If you have multiple myeloma, a PET-CT scan will pick up the lesions by virtue of the cancer cells absorbing the biomarker you ingest before the scan...but I have no idea if it would help you determine if the lesions are due to multiple myeloma or lupus.
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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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