My husband has a form of arthritis called AS, Anklyosing Spondylitis, and has for many years. He is 35 years old and this past year he had an issue with his arthritis where he ended up in the ER and long story short there was a scare of him having multiple myeloma. Today he found out that his aunt has been battling myeloma and he has been wondering if some of his symptoms aren't related to his arthritis but could be undisguised myeloma.
History: the reason we still have the question is that he had a PET scan which showed a ton of lytic bone lesions that could never be explained. There were two bone marrow tests done, both of which came back negative and then a bone biopsy was done and also came back negative. His initial ER visit (which we assumed was arthritis related, but now are not so sure included elevated calcium levels which took medication to control and dehydration, horrible vomiting and weight loss).
We went to one of the top cancer hospitals in the nation but now with the cancer diagnosis of his aunt and the unanswered questions of the lesions and his continued bone pain (arthritis or something else) we are wondering if it could have gotten diagnosed wrong.
Any information or ideas?
Thanks in advance.
Forums
Re: Some symptoms of myeloma - what to do next?
Sorry to hear about your husband.
A mnemonic sometimes used to remember the common symptoms of multiple myeloma is CRAB: C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions.
Is your husband anemic? How are the kidneys?
A mnemonic sometimes used to remember the common symptoms of multiple myeloma is CRAB: C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions.
Is your husband anemic? How are the kidneys?
Re: Some symptoms of myeloma - what to do next?
If the bone marrow biopsy came back with no indication of myeloma, then that's a fairly strong sign that your husband does not have myeloma. Usually, a bone marrow biopsy is a key step in diagnosing myeloma.
You mention that "bone marrow tests" were done before the bone marrow biopsy. Can you be more specific about what those tests were?
One weakness of bone marrow biopsies, I'm told, is that the bone marrow can be "patchy", so a biopsy may not always get a representative sample.
Did your husband also do the urine and blood testing to determine if he has elevated protein levels that are the most common sign of myeloma? If not, those would be absolutely key tests to have done.
Also, there is what is known as a free light chain test that is also useful in determining if someone has myeloma.
This webpage explains the kinds of tests that are useful for diagnosing myeloma:
http://labtestsonline.org/understanding/conditions/mult-myeloma/start/2
Good luck, and please let us know what else you find out about your husband's situation.
You mention that "bone marrow tests" were done before the bone marrow biopsy. Can you be more specific about what those tests were?
One weakness of bone marrow biopsies, I'm told, is that the bone marrow can be "patchy", so a biopsy may not always get a representative sample.
Did your husband also do the urine and blood testing to determine if he has elevated protein levels that are the most common sign of myeloma? If not, those would be absolutely key tests to have done.
Also, there is what is known as a free light chain test that is also useful in determining if someone has myeloma.
This webpage explains the kinds of tests that are useful for diagnosing myeloma:
http://labtestsonline.org/understanding/conditions/mult-myeloma/start/2
Good luck, and please let us know what else you find out about your husband's situation.
Re: Some symptoms of myeloma - what to do next?
First off, I'm not a doc. I'm going to guess that the "bone biopsy" was actually a biopsy of one of the lytic lesions. If two bone marrow biopsies and a lytic lesion biopsy came back negative, I agree with Terry that it likely isn't multiple myeloma. I'm going to also guess that they already did the blood and urine tests that Terry mentioned, but if they haven't, it would be good to have those done.
Did the doctors discuss a differential diagnosis (this is like on the TV show House where they sit around and put up all the symptoms on a white board and discuss and try to eliminate all the possible causes) of his symptoms (lytic lesions, hypercalcemia, nausea, vomiting) and the potential diseases that could be causing it?
While this is simply an awful way to try and guess what it might be (and I strongly recommend you don't do it), a quick google search of these symptoms shows that patients with Non Hodgkins Lymphoma or Leukemia have had situations where lytic lesions and hypercalcemia were present.
In any case, I would suggest finding a top hematologist at a top cancer institution that could test for a number of blood cancers that could get to the bottom of this (and don't try to diagnose this via google...it will just drive you crazy and lead you down a bunch of false paths).
Note that from time to time, some great docs monitor this site and they may chime in here with a much better and certainly more educated comment.
Did the doctors discuss a differential diagnosis (this is like on the TV show House where they sit around and put up all the symptoms on a white board and discuss and try to eliminate all the possible causes) of his symptoms (lytic lesions, hypercalcemia, nausea, vomiting) and the potential diseases that could be causing it?
While this is simply an awful way to try and guess what it might be (and I strongly recommend you don't do it), a quick google search of these symptoms shows that patients with Non Hodgkins Lymphoma or Leukemia have had situations where lytic lesions and hypercalcemia were present.
In any case, I would suggest finding a top hematologist at a top cancer institution that could test for a number of blood cancers that could get to the bottom of this (and don't try to diagnose this via google...it will just drive you crazy and lead you down a bunch of false paths).
Note that from time to time, some great docs monitor this site and they may chime in here with a much better and certainly more educated comment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Some symptoms of myeloma - what to do next?
I agree with the above posts, especially if this was a directed bone marrow biopsy of a lytic lesion. However, if it was a regular BMB, there are reported cases where one can have a negative BMB but still have myeloma. This is because with some individuals the pattern of plasma cells in the marrow can be "patchy". It is not uniformly diffuse throughout the marrow cavities. In one spot, it is clean and in another area, there can be sheets of monoclonal plasma cells. Multibilly's advice is spot on. Good luck. Terry L.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Some symptoms of myeloma - what to do next?
I too had a couple of ER visits like you described. No cause was determined both times.
Multibilly - Loved your HOUSE reference ... "Did the doctors discuss a differential diagnosis (this is like on the TV show House where they sit around and put up all the symptoms on a white board and discuss and try to eliminate all the possible causes) of his symptoms (lytic lesions, hypercalcemia, nausea, vomiting) and the potential diseases that could be causing it?"
Where can I check in? lol
Multibilly - Loved your HOUSE reference ... "Did the doctors discuss a differential diagnosis (this is like on the TV show House where they sit around and put up all the symptoms on a white board and discuss and try to eliminate all the possible causes) of his symptoms (lytic lesions, hypercalcemia, nausea, vomiting) and the potential diseases that could be causing it?"
Where can I check in? lol
Re: Some symptoms of myeloma - what to do next?
We are not talking here about ER visits, but bone marrow biopsies, PET scan. All this usually coming after full blood and urine work out?! Do you have his blood and urine results. Do they show elevated M-protein or any suggestion of that? Probably, you can call the famous cancer center and ask for copies?
As per my knowledge, docs order biopsies if M spike is exist OR they can not find any but still suspect multiple myeloma (non-secretory). it would sound to me completely unprofessional to send somebody for an invasive procedure without having blood and urine work done.
There is no such thing like unexplained multiple lytic lesions! And they may be actually as the result of many illnesses or metastases beside myeloma.
Can you redo SPEP / UPEP?
As per my knowledge, docs order biopsies if M spike is exist OR they can not find any but still suspect multiple myeloma (non-secretory). it would sound to me completely unprofessional to send somebody for an invasive procedure without having blood and urine work done.
There is no such thing like unexplained multiple lytic lesions! And they may be actually as the result of many illnesses or metastases beside myeloma.
Can you redo SPEP / UPEP?
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nomm
Re: Some symptoms of myeloma - what to do next?
Thanks for all of the responses. We pulled the blood work he had done while going through all of this and I found some interesting things. Maybe others can shed some more light since I am just learning what much of what this means especially in relation to blood work.
To answer a few questions: In the ER they did a fine needle aspiration, which was inconclusive so they later did a full bone marrow biopsy that was negative for myeloma but the doctors still saw some concerned things on xray because he came in with a fracture in his back. The xray prompted the question regarding lesions and then we went to the PET scan and to the oncologist from there. It is hard to remember all of the details now since it has been 16 months almost since this trip began so I may have the timeline a bit messed up...
Blood work: This was from when all of this happened 11/12 to answer the questions some of you asked. Free Lambda Light Chain was 25.10, Free Kappa was 23.40 and Ratio was .93. The Lambda based on the paper was almost over range and the Lambda was over range.
The last biopsy that pretty much closed the case was a biopsy of a lesion specifically. They went in and took a few samples that we were told were negative. I do have the report on that too so I can answer questions. This was mentioned from it though. "The serum protein electrophoresis is negative for an M-protein peak". I heard a few responders mention M proteins.
This is the report from the lesion biopsy:
"This is a 34 year old male with a history of ankylosing spondylitis, now presenting with multiple lytic lesions including the right pelvis. The biopsies were obtained to further characterize the lesions. Serum protein electrophoresis is negative for an M-protein peak. Formalin fixed paraffin embedded sections from all four biopsies show a mixture of intact and fragmented bone fragments with cellular marrow (cellularity: 50 to 70%) showing maturing trilineage hematopoiesis. Focal crush artifacts (most pronounced in part A) are noted. No obvious areas of atypical infiltrates are noted. There is no granuloma formation in the marrow. Focal replacement of marrow by amphophilic material is noted in one bone fragment with osteosclerosis (part A). No atypical cells are noted in or around the amphophilic material. Immunohistochemistry studies performed on part A (biopsy#1) shows no increase in CD34-positive blasts. CD117 stains few scattered immature cells and erythroid precursors along with scattered mast cells. Myeloperoxidase and Glycophorin A stain myeloid and erythroid cells respectively in usual amount and distribution. CD20 staining shows few scattered small B-lymphocytes. CD3 staining shows mildly increased CD3-positive in patchy distribution with a CD4:CD8 ratio of 2:1. CD138 stain shows scattered plasma cells with polytypic distribution of kappa and lambda light chains. CD68 (KP1) stain shows background histiocytes. Cytokeratin stain is negative for metastatic carcinoma. Overall, there is no diagnostic morphologic evidence of acute leukemia, lymphoma, plasma cell myeloma or metastatic carcinoma in the current biopsies. "
It all sounds good but still no answers for the lesions. Basically we were told we may never know what causes the lesions but I don't know that I can deal with that. Especially since he is still suffering with lots of chronic symptoms that fall under myeloma but could be arthritis related.
Thanks for any responses from here ... I am curious to see what everyone says based on the lab results etc I have provided.
To answer a few questions: In the ER they did a fine needle aspiration, which was inconclusive so they later did a full bone marrow biopsy that was negative for myeloma but the doctors still saw some concerned things on xray because he came in with a fracture in his back. The xray prompted the question regarding lesions and then we went to the PET scan and to the oncologist from there. It is hard to remember all of the details now since it has been 16 months almost since this trip began so I may have the timeline a bit messed up...
Blood work: This was from when all of this happened 11/12 to answer the questions some of you asked. Free Lambda Light Chain was 25.10, Free Kappa was 23.40 and Ratio was .93. The Lambda based on the paper was almost over range and the Lambda was over range.
The last biopsy that pretty much closed the case was a biopsy of a lesion specifically. They went in and took a few samples that we were told were negative. I do have the report on that too so I can answer questions. This was mentioned from it though. "The serum protein electrophoresis is negative for an M-protein peak". I heard a few responders mention M proteins.
This is the report from the lesion biopsy:
"This is a 34 year old male with a history of ankylosing spondylitis, now presenting with multiple lytic lesions including the right pelvis. The biopsies were obtained to further characterize the lesions. Serum protein electrophoresis is negative for an M-protein peak. Formalin fixed paraffin embedded sections from all four biopsies show a mixture of intact and fragmented bone fragments with cellular marrow (cellularity: 50 to 70%) showing maturing trilineage hematopoiesis. Focal crush artifacts (most pronounced in part A) are noted. No obvious areas of atypical infiltrates are noted. There is no granuloma formation in the marrow. Focal replacement of marrow by amphophilic material is noted in one bone fragment with osteosclerosis (part A). No atypical cells are noted in or around the amphophilic material. Immunohistochemistry studies performed on part A (biopsy#1) shows no increase in CD34-positive blasts. CD117 stains few scattered immature cells and erythroid precursors along with scattered mast cells. Myeloperoxidase and Glycophorin A stain myeloid and erythroid cells respectively in usual amount and distribution. CD20 staining shows few scattered small B-lymphocytes. CD3 staining shows mildly increased CD3-positive in patchy distribution with a CD4:CD8 ratio of 2:1. CD138 stain shows scattered plasma cells with polytypic distribution of kappa and lambda light chains. CD68 (KP1) stain shows background histiocytes. Cytokeratin stain is negative for metastatic carcinoma. Overall, there is no diagnostic morphologic evidence of acute leukemia, lymphoma, plasma cell myeloma or metastatic carcinoma in the current biopsies. "
It all sounds good but still no answers for the lesions. Basically we were told we may never know what causes the lesions but I don't know that I can deal with that. Especially since he is still suffering with lots of chronic symptoms that fall under myeloma but could be arthritis related.
Thanks for any responses from here ... I am curious to see what everyone says based on the lab results etc I have provided.
Re: Some symptoms of myeloma - what to do next?
Sorry for your husband pain. But I do not understand if in this blood work results M-spike is present? It should say clear "not preset" or given explanation with recommendation.
What the oncologist said about free kappa/lambda ratio? Did he see this results?
Was urine proteine electrophoresis done? What was done regarding the broken vertebrae?
Did he have any follow up with somebody for over this 16 months?
Who else in the family except the aunt had myeloma?
Did they check his thyroid and paratyroid hormones?
Sorry, too many questions, but they all are very important. What are you planning to do about his conditions? I would suggest full myeloma related work done again.
What the oncologist said about free kappa/lambda ratio? Did he see this results?
Was urine proteine electrophoresis done? What was done regarding the broken vertebrae?
Did he have any follow up with somebody for over this 16 months?
Who else in the family except the aunt had myeloma?
Did they check his thyroid and paratyroid hormones?
Sorry, too many questions, but they all are very important. What are you planning to do about his conditions? I would suggest full myeloma related work done again.
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nomm
Re: Some symptoms of myeloma - what to do next?
See a top hematologist at a top cancer center to get to the bottom of this....especially since he is suffering and you've got fracturing that is occurring.
Since there was only one real bone marrow biopsy done, it might have just hit a "dry" spot, like one of the other posts said. It's not like multiple myeloma cells are uniformly spread throughout one's bones, so sometimes the biopsies are hit and miss.
Not having an M-protein peak (M-Spike) occurs in about 10-20% of multiple myeloma patients, so that is not a definitive test either.
I will admit this is peculiar given the other results...which is why I say you should see a top notch hematologist.
Also, like one of the other posts said, "there has to be a reason", so I wouldn't personally be happy without a diagnosis given these serious symptoms.
If you let us know where you are located, folks on the forum could make some recommendations on where to go.
Since there was only one real bone marrow biopsy done, it might have just hit a "dry" spot, like one of the other posts said. It's not like multiple myeloma cells are uniformly spread throughout one's bones, so sometimes the biopsies are hit and miss.
Not having an M-protein peak (M-Spike) occurs in about 10-20% of multiple myeloma patients, so that is not a definitive test either.
I will admit this is peculiar given the other results...which is why I say you should see a top notch hematologist.
Also, like one of the other posts said, "there has to be a reason", so I wouldn't personally be happy without a diagnosis given these serious symptoms.
If you let us know where you are located, folks on the forum could make some recommendations on where to go.
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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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