Hi All,
I got the results back from last Friday's bloodwork.
Had a new SPEP & IFE done as well as a Serum Free Light Chain test.
SPEP & IFE were all within the normal limits (had an SPEP done early in January, which was normal too.)
Free Light Chain test results were also normal:
Kappa 9.6mg/L (3.3-19.4 range)
Lambda 7.8mg/L (5.7-26.3 range)
K/L Ratio 1.23 (0.26-1.65 range)
So given both of those, I guess I can be 99% sure I don't have multiple myeloma and a 1% chance I have non-secreting myeloma that's not being picked up on those tests?
Where do I go from here?
Do I keep pushing my doc for more tests (MRI or CT/PET)? X-rays didn't show anything 6 weeks back. Do I push to see a hem/onc to ask for a bone marrow biopsy? Do I ask for a 24-hour urine too to make sure nothing got missed in the free light chain test?
Thanks,
Jason
Forums
Re: Not sure of my diagnosis - what should I do next?
Hi Jason,
As you've said, you're at the point now with your test results where there is only about a 1 percent chance that you have multiple myeloma.
Actually, the probability may be even lower, given that you don't have any blood test results suggesting that the disease is present in your bones. Your calcium and hemoglobin levels, which would signal if the disease is causing problems in your bones, are within normal ranges, if I recall correctly what you've written earlier in the thread.
All that having been said, if you really want to rule out a malignancy such as myeloma as the source of your bone pain, then a PET scan, or PET/CT, should give a definitive answer. It's also possible, I guess, that it might provide information helpful for determining if something else is the cause of the bone pain.
PET scans are expensive, though, so you may have some difficulty getting one approved. But perhaps one of your doctors will help you arrange one, just to make sure the myeloma "box" has been checked in your search for the right diagnosis.
At this point, or after you have your PET scan, you need to speak with one of the doctors you trust the most and ask them who is the best person you can take all your results to so you can get an expert opinion on what to do next. Honestly, I don't know what sort of doctor that would be. An orthopedist? A pathologist who specializes in bone-related diseases? I can't say.
Good luck as you continue your search for the correct diagnosis.
As you've said, you're at the point now with your test results where there is only about a 1 percent chance that you have multiple myeloma.
Actually, the probability may be even lower, given that you don't have any blood test results suggesting that the disease is present in your bones. Your calcium and hemoglobin levels, which would signal if the disease is causing problems in your bones, are within normal ranges, if I recall correctly what you've written earlier in the thread.
All that having been said, if you really want to rule out a malignancy such as myeloma as the source of your bone pain, then a PET scan, or PET/CT, should give a definitive answer. It's also possible, I guess, that it might provide information helpful for determining if something else is the cause of the bone pain.
PET scans are expensive, though, so you may have some difficulty getting one approved. But perhaps one of your doctors will help you arrange one, just to make sure the myeloma "box" has been checked in your search for the right diagnosis.
At this point, or after you have your PET scan, you need to speak with one of the doctors you trust the most and ask them who is the best person you can take all your results to so you can get an expert opinion on what to do next. Honestly, I don't know what sort of doctor that would be. An orthopedist? A pathologist who specializes in bone-related diseases? I can't say.
Good luck as you continue your search for the correct diagnosis.
Re: Not sure of my diagnosis - what should I do next?
Hi Jason,
It sounds like the current doctor/facility you are working with hasn't been able to come up with a diagnosis in spite of running a lot of different tests for many different diseases.
Since you are in Boston, have you considered just trying a completely different institution to get a fresh perspective on things? I'm not sure where you are going now, but I would consider trying to see Dr. Paul Richardson at Dana Farber or Dr. Napoor Raje at Mass General (or one of their colleagues, respectively).
It sounds like the current doctor/facility you are working with hasn't been able to come up with a diagnosis in spite of running a lot of different tests for many different diseases.
Since you are in Boston, have you considered just trying a completely different institution to get a fresh perspective on things? I'm not sure where you are going now, but I would consider trying to see Dr. Paul Richardson at Dana Farber or Dr. Napoor Raje at Mass General (or one of their colleagues, respectively).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure of my diagnosis - what should I do next?
Multibilly,
I had actually spoken with Dana Farber a few weeks back. I had my doctors at Tufts send them all my recent test results. Unfortunately, they wouldn't see me for a consult because all those tests didn't point to multiple myeloma.
There is a good myeloma specialist at my hospital, so I am going to ask again during my follow-up visit on Wednesday.
Is a PET/CT better than an MRI for picking this stuff up?
Jason
I had actually spoken with Dana Farber a few weeks back. I had my doctors at Tufts send them all my recent test results. Unfortunately, they wouldn't see me for a consult because all those tests didn't point to multiple myeloma.
There is a good myeloma specialist at my hospital, so I am going to ask again during my follow-up visit on Wednesday.
Is a PET/CT better than an MRI for picking this stuff up?
Jason
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jashem1980
Re: Not sure of my diagnosis - what should I do next?
Hi Jason,
I think a doc might be best suited to tell you what the next best test might be in your unique circumstances. In the meantime, I will try to answer your question more generally.
A PET/CT or MRI might help in the context of helping get to the bottom of the what might be causing the bone pain, but it would not be the definitive test for seeing if you specifically have some form of multiple myeloma, including non-secretory multiple myeloma. A bone marrow biopsy is really the definitive test for seeing if one has some form of multiple myeloma or a related disease. To put that statement in perspective, I have smoldering multiple myeloma, which has been confirmed by a bone marrow biopsy. But my PET/CT scans are completely clean and show no indication of multiple myeloma bone damage, nor any disease for that matter.
To understand the difference between a PET/CT and MRI for multiple myeloma diagnostic purposes, you might want to read this article.
P Kapoor, "To PET or not to PET," Beacon forum posting Jul 24, 2014.
One thing to consider is that there are very few places that do whole-body MRIs. One typically only gets one part of one's body scanned with an MRI, such as one's spine - at least that is the case in Colorado where we have no publicly available whole-body MRI machines. But being in Boston, you might have better access to whole-body MRIs than I do.
On the other hand, PET/CTs scan your entire body, so they can pick up cancerous hot spots and/or bone damage anywhere in your body. I personally use PET/CTs and skeletal surveys (whole-body xrays) for monitoring purposes because I have no bone pain and I have no idea where a myeloma-related lesion might pop up in the future.
I think a doc might be best suited to tell you what the next best test might be in your unique circumstances. In the meantime, I will try to answer your question more generally.
A PET/CT or MRI might help in the context of helping get to the bottom of the what might be causing the bone pain, but it would not be the definitive test for seeing if you specifically have some form of multiple myeloma, including non-secretory multiple myeloma. A bone marrow biopsy is really the definitive test for seeing if one has some form of multiple myeloma or a related disease. To put that statement in perspective, I have smoldering multiple myeloma, which has been confirmed by a bone marrow biopsy. But my PET/CT scans are completely clean and show no indication of multiple myeloma bone damage, nor any disease for that matter.
To understand the difference between a PET/CT and MRI for multiple myeloma diagnostic purposes, you might want to read this article.
P Kapoor, "To PET or not to PET," Beacon forum posting Jul 24, 2014.
One thing to consider is that there are very few places that do whole-body MRIs. One typically only gets one part of one's body scanned with an MRI, such as one's spine - at least that is the case in Colorado where we have no publicly available whole-body MRI machines. But being in Boston, you might have better access to whole-body MRIs than I do.
On the other hand, PET/CTs scan your entire body, so they can pick up cancerous hot spots and/or bone damage anywhere in your body. I personally use PET/CTs and skeletal surveys (whole-body xrays) for monitoring purposes because I have no bone pain and I have no idea where a myeloma-related lesion might pop up in the future.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure of my diagnosis - what should I do next?
Jason, I stand corrected, and I am glad Multibilly stepped in with his follow-up posting.
I had been leaning towards recommending that you get a bone marrow biopsy because, as Multibilly mentioned, it really is a key diagnostic tool when it comes to myeloma. I was concerned, however, that the biopsy, which has a hit-or-miss element to it because myeloma can occur in "patches" in the bone marrow, might not definitively settle the issue in your case.
Unfortunately, I got too creative in trying to come up with a potentially better way to rule out myeloma. I mistakenly assumed that a PET, or PET/CT, scan would be able to pick up just about any myeloma cells that might be in your bones or body. Clearly, as Multibilly has pointed out, that is not the case, and Dr. Kapoor also mentions the limitations of PET scans in the posting Multibilly linked to.
I agree with Multibilly that, at this point, it may be better to get the advice of a doctor as to the best next step forward. He or she will be able to review all your tests, speak to you in more detail about what you've been feeling and experiencing, and pull all those details together to plan how to finalize your diagnosis.
Good luck!
I had been leaning towards recommending that you get a bone marrow biopsy because, as Multibilly mentioned, it really is a key diagnostic tool when it comes to myeloma. I was concerned, however, that the biopsy, which has a hit-or-miss element to it because myeloma can occur in "patches" in the bone marrow, might not definitively settle the issue in your case.
Unfortunately, I got too creative in trying to come up with a potentially better way to rule out myeloma. I mistakenly assumed that a PET, or PET/CT, scan would be able to pick up just about any myeloma cells that might be in your bones or body. Clearly, as Multibilly has pointed out, that is not the case, and Dr. Kapoor also mentions the limitations of PET scans in the posting Multibilly linked to.
I agree with Multibilly that, at this point, it may be better to get the advice of a doctor as to the best next step forward. He or she will be able to review all your tests, speak to you in more detail about what you've been feeling and experiencing, and pull all those details together to plan how to finalize your diagnosis.
Good luck!
Re: Not sure of my diagnosis - what should I do next?
Hi,
Is there any chance that a 24-hour Urine SPEP / IFE could test positive for multiple myeloma if the SPEP / sFLC combination were both in the normal ranges?
I have seen conflicting research on the matter through some researches I have done.
I have a follow-up appointment this Wednesday with my doc and I want to ask for a 24-hour urine test too to make 100% sure the SPEP / sFLC combo didn't miss something (I know the exception would be if I were truly non-secreting).
Jason
Is there any chance that a 24-hour Urine SPEP / IFE could test positive for multiple myeloma if the SPEP / sFLC combination were both in the normal ranges?
I have seen conflicting research on the matter through some researches I have done.
I have a follow-up appointment this Wednesday with my doc and I want to ask for a 24-hour urine test too to make 100% sure the SPEP / sFLC combo didn't miss something (I know the exception would be if I were truly non-secreting).
Jason
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Jashem1980
Re: Not sure of my diagnosis - what should I do next?
Just to make sure everyone is on the same page, you want to know if it would be helpful to do a 24-hour urine protein electrophoresis (UPEP) and immunofixation given that your SPEP, serum free light chains, AND serum immunofixation have all come back with no sign of monoclonal proteins and no sight of abnormal free light chain levels.
I don't know the definitive answer to your question, although my gut says that the 24-hour urine won't tell you a lot more. I think it's important, however, not to forget when you list the tests that you have had that you also had a serum immunofixation to test for the presence of monoclonal proteins, and it came up negative.
I don't know the definitive answer to your question, although my gut says that the 24-hour urine won't tell you a lot more. I think it's important, however, not to forget when you list the tests that you have had that you also had a serum immunofixation to test for the presence of monoclonal proteins, and it came up negative.
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JimNY
Re: Not sure of my diagnosis - what should I do next?
A couple weeks back, I asked my doctor to run the 24-hour urine in conjunction with sFLC and he said he has never really ordered a 24-hour urine in the past couple of years for anyone but thought the sFLC would suffice.
Jason
Jason
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Jashem1980
Re: Not sure of my diagnosis - what should I do next?
The addition of 24 hour urine collection to the serum protein electrophoresis, serum immunofixation, and serum free light chain assay in screening for a plasma cell disorder does not add anything to the evaluation.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
38 posts
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