Good evening all,
I will start with a bit of history. I am a medical laboratory technologist (and quite the advocate for my family's health). We live in Ontario, Canada.
My husband for the past year has been losing weight – perhaps 30 pounds (14 kg) in the last three months, and probably about 60 pounds in the past year. I have been bugging him to go to the doctor for a while, but he felt he was not feeling well due shoulder pain (diagnosed with frozen shoulder), not sleeping well, and a stressful job.
During the weekend of Father's Day in June, hubby was so exhausted that he only got out of bed four times. I wanted to take him to our Emergency Department, but he would not go. On the Monday night we had an appointment for an interview with a new family doctor (very hard to get a doctor here!). At the interview, the doctor recommended hubby go straight to Emergency, as he was not looking well, and he could not give him the time he deserved to be checked out thoroughly.
We went to Emergency, but left after sitting in the waiting room (hubby falling asleep in the chair) for six hours and being told it would be many hours until we still saw a doctor. Next morning we went to a bigger city and he was admitted into hospital there.
During his stay there, he was extremely dehydrated, elevated liver enzymes, elevated INR, electrolytes way out of wack, low albumin, anemic, elevated pancreatic enzymes, they said elevated calcium, but all values since discharge have been low normal or low. CT scan showed mass on pancreas, enlarged liver, enlarged messentary lymph nodes, and spots on the spine.
They were concerned that it was pancreatic cancer, metastisized and causing a malabsorption syndrome. As they were trying to stabilize his blood levels, it took another week before they could get him in for an MRI. MRI showed the "spots" on the spine were "spurs", the pancreatic mass was "just" a mistaken shadow, and lymph nodes were fine, but liver was enlarged. They then moved forward with celiac bloodwork testing. Discharged him next day since his levels had somewhat stabilized.
Celiac has come back positive. New family doctor was livid when hubby went in for follow up. He could not believe nothing really was accomplished and that he had been discharged.
I am impressed with the new doctor. No ego. Is prepared to listen, discuss, and refer to specialists. He agrees it may be celiac (has already sent hubby for biopsies to confirm), but feels there is something else going on. He is following elevated liver enzymes, and they are slowing decreasing, but the alk phosphatase is staying elevated (as I know, can be both liver and bone).
I asked for a PTH; 5x higher than it should be. He is referred to an endocrinologist; we are still waiting for appointment (although, hyperparathyroid can be secondary due to celiac). Because the albumin has been low and hubby has consistent low RBC's and hemoglobin (low normal WBC's and platelets), I had asked about doing a protein electrophoresis (PEP). Doctor also ordered Bence-Jones protein (BJP) testing. PEP showed a band in the front gamma globulin region. BJP was negative, but positive for albumin.
We just got back the bone density scan. Moderate osteoporosis.
Bloodwork for serum immunofixation just came back today.
Monoclonal band of IgA, type kappa.
Monoclonal band accounts for 17% of the gamma fraction.
Quantitative immunoglobulins - IgA 5.66 g/L (ref 0.85 - 3.85)
His ferritin has also dropped to 19 within the past two weeks from normal (ref 25-200). His creatinine keeps dropping and is now down to 47 (ref 60-127). I assume this is due to the malnutrition and muscle wasting?
Hubby is feeling somewhat better. He was gaining weight since coming home, except last week he did lose 0.5 lbs?
Soooo, I would love some input. Our doctor is very receptive to suggestions and how to move forward (believes I am aiding in the care and positive direction for my hubby). I am thinking hubby needs to meet with an oncologist next? I am unsure if the IgA can be so elevated due to the celiac? I do know from reading that multiple myeloma can be associated with celiac. We are at a point that I am, laboratory-wise, feeling out of my league. I am more into microbiology and chemistry, not hematology!
Tomorrow we have a doctors appointment to discuss most recent results, weigh in, etc. Should there be any other tests I am requesting? We do have an excellent cancer clinic within the region (1/2 hr away). We may have some connections to get into it quicker than most? I am thinking hubby is in the "smoldering" stage, but I cannot seem to find any direct info for definitive thoughts. No, he has not had a bone biopsy done.
Thanks all!
Kim
Forums
Re: Husband may have multiple myeloma
Hi Kim,
Thanks for sharing this information, and how did you think of multiple myeloma?
Further lab tests that could be done would be the serum free light chains (sFLC), which give the kappa free, lambda free, and kappa-lambda ratio, as well as the serum protein electrophoresis (SPEP) tests, which measure monoclonal protein. I find that I can only get these tests at our cancer centre's lab, not the usual city labs. The sFLC test measures free floating antibodies from the myeloma cancer cells, which spew off excess protein antibodies. And the SPEP measures a band of uniform proteins that also indicates that cancer cells are producing high quantities of just one type of antibody proteins, i.e. monoclonal.
If those tests were positive for myeloma, then further tests such as a bone marrow biopsy would confirm the diagnosis.
Hope that helps.
Thanks for sharing this information, and how did you think of multiple myeloma?
Further lab tests that could be done would be the serum free light chains (sFLC), which give the kappa free, lambda free, and kappa-lambda ratio, as well as the serum protein electrophoresis (SPEP) tests, which measure monoclonal protein. I find that I can only get these tests at our cancer centre's lab, not the usual city labs. The sFLC test measures free floating antibodies from the myeloma cancer cells, which spew off excess protein antibodies. And the SPEP measures a band of uniform proteins that also indicates that cancer cells are producing high quantities of just one type of antibody proteins, i.e. monoclonal.
If those tests were positive for myeloma, then further tests such as a bone marrow biopsy would confirm the diagnosis.
Hope that helps.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband may have multiple myeloma
Wow Kim,
Welcome to the forum.
Sounds like your hubby has quite a bit going on. It's great you are looking out for him.
I'm not a doc and I will only comment on the potential myeloma-related items. The things that jump out at me with respect to a potential monoclonal gammopathy, such as MGUS, smoldering multiple myeloma, or symptomatic myeloma, are:
1. Immunofixation that is positive for IgA kappa monoclonal band.
2. Elevated IgA
3. Spurs on his spine (possible lytic lesions)?
Sounds like you did a random urine PEP, not a 24 hour urine PEP?
If they measured his IgA, what were his IgG and IgM levels?
Was his cardiac function checked out?
In line with what Nancy said, I'd be asking for the following follow up tests and items:
Also, given the issues going on with his liver and the MRI "false alarm" with his pancreas and the fact that his immunofixation shows a monoclonal band, I would also try to rule out amyloidosis (which you can only verify via a tissue biopsy). Amyloidosis presents with many of the same features of multiple myeloma, but the amyloid protein build-up in the body that results from the disease tends to also gum up and damage one or more organs, such as the heart, liver, kidneys, pancreas, etc.
Let us know how things turn out.
Welcome to the forum.
Sounds like your hubby has quite a bit going on. It's great you are looking out for him.
I'm not a doc and I will only comment on the potential myeloma-related items. The things that jump out at me with respect to a potential monoclonal gammopathy, such as MGUS, smoldering multiple myeloma, or symptomatic myeloma, are:
1. Immunofixation that is positive for IgA kappa monoclonal band.
2. Elevated IgA
3. Spurs on his spine (possible lytic lesions)?
Sounds like you did a random urine PEP, not a 24 hour urine PEP?
If they measured his IgA, what were his IgG and IgM levels?
Was his cardiac function checked out?
In line with what Nancy said, I'd be asking for the following follow up tests and items:
- Serum PEP
- Serum free light chain assay
- 24-hour urine PEP
- Bone marrow biopsy, once you've got all the above tests in *
- Review his spinal MRI findings with another radiologist with myeloma-related lytic lesions in mind?
- A referral to a myeloma specialist to review the items above.
Also, given the issues going on with his liver and the MRI "false alarm" with his pancreas and the fact that his immunofixation shows a monoclonal band, I would also try to rule out amyloidosis (which you can only verify via a tissue biopsy). Amyloidosis presents with many of the same features of multiple myeloma, but the amyloid protein build-up in the body that results from the disease tends to also gum up and damage one or more organs, such as the heart, liver, kidneys, pancreas, etc.
Let us know how things turn out.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Husband may have multiple myeloma
Thanks Multibilly,
Yes, random urine PEP. Sigh. He did a 24-hour urine, but only to test for protein. It was negative.
Serum PEP showed decreased albumin and the presence of a homogenous band in the front gamma globulin region suggesting a monoclonal gammopathy.
IgG and IgM were in the normal range
EKG normal
Yes, and the more I think about the "spurs", I will push for those results from the hospital, as I wonder about the possibility of lytic lesions. He is due in a few months for a repeat CT, as they want to monitor a "mass" on the spleen. So I may request it be done sooner than later. And push family doctor to get us into a multiple myeloma oncologist.
I will ask for the free light chain assay.
Thanks again!
Kim
Yes, random urine PEP. Sigh. He did a 24-hour urine, but only to test for protein. It was negative.
Serum PEP showed decreased albumin and the presence of a homogenous band in the front gamma globulin region suggesting a monoclonal gammopathy.
IgG and IgM were in the normal range
EKG normal
Yes, and the more I think about the "spurs", I will push for those results from the hospital, as I wonder about the possibility of lytic lesions. He is due in a few months for a repeat CT, as they want to monitor a "mass" on the spleen. So I may request it be done sooner than later. And push family doctor to get us into a multiple myeloma oncologist.
I will ask for the free light chain assay.
Thanks again!
Kim
Re: Husband may have multiple myeloma
Hi Kim,
I'm very sorry to hear about all that your husband (and you) have been through. Your husband is lucky to have you helping him through this, as your knowledge and experience is certainly making a difference.
You've gotten lots of good feedback already. I just want to add a few things.
Multibilly listed several things that could suggest that what your husband is experiencing may be myeloma-related. The one thing I would add to that list is the anemia you mentioned.
Also, this statement that you made:
suggests that your husband may have had both a serum immunofixation and a serum protein electrophoresis (SPEP), since it quantifies the monoclonal band at "17 percent of the gamma fraction." Based on the normal range for the gamma fraction, which is 0.7 to 1.6 g/dL (7 to 16 g/L), this suggests his monoclonal protein (M-spike) may be no higher than about 0.3 or 0.4 g/dL (3 or 4 g/L).
That isn't very high, so your guess that this may be smoldering myeloma makes sense, but that would need to be confirmed by further tests, including the bone marrow biopsy that Multibilly mentioned.
That said, if the anemia is significant, and if it's due to something myeloma-related, then your husband would be classified as having symptomatic myeloma (anemia would be the symptom), which typically leads to active treatment of the disease.
On the upside, there are no signs as of yet of your husband's kidneys being damaged – at least none that I noticed in what you wrote – and, honestly, it really seems to me that something other than multiple myeloma is likely to be causing all the other issues your husband has had. That's one reason I also second Multibilly's suggestion to have the possibility of amyloidosis investigated, as well as the continuing investigation into the possibility of celiac playing a major role.
In any case, it would be a good idea to get your husband to a myeloma / plasma cell disorder specialist (they are often one and the same). A standard hematologist-oncologist would be better than just a standard oncologist, but your husband's case seems complicated enough that it would particularly benefit from having a specialist look over his results and perform additional testing.
Let us know if you have any additional questions, and please keep us updated on what you find out.
I'm very sorry to hear about all that your husband (and you) have been through. Your husband is lucky to have you helping him through this, as your knowledge and experience is certainly making a difference.
You've gotten lots of good feedback already. I just want to add a few things.
Multibilly listed several things that could suggest that what your husband is experiencing may be myeloma-related. The one thing I would add to that list is the anemia you mentioned.
Also, this statement that you made:
Bloodwork for serum immunofixation just came back today. Monoclonal band of IgA, type kappa. Monoclonal band accounts for 17% of the gamma fraction.
suggests that your husband may have had both a serum immunofixation and a serum protein electrophoresis (SPEP), since it quantifies the monoclonal band at "17 percent of the gamma fraction." Based on the normal range for the gamma fraction, which is 0.7 to 1.6 g/dL (7 to 16 g/L), this suggests his monoclonal protein (M-spike) may be no higher than about 0.3 or 0.4 g/dL (3 or 4 g/L).
That isn't very high, so your guess that this may be smoldering myeloma makes sense, but that would need to be confirmed by further tests, including the bone marrow biopsy that Multibilly mentioned.
That said, if the anemia is significant, and if it's due to something myeloma-related, then your husband would be classified as having symptomatic myeloma (anemia would be the symptom), which typically leads to active treatment of the disease.
On the upside, there are no signs as of yet of your husband's kidneys being damaged – at least none that I noticed in what you wrote – and, honestly, it really seems to me that something other than multiple myeloma is likely to be causing all the other issues your husband has had. That's one reason I also second Multibilly's suggestion to have the possibility of amyloidosis investigated, as well as the continuing investigation into the possibility of celiac playing a major role.
In any case, it would be a good idea to get your husband to a myeloma / plasma cell disorder specialist (they are often one and the same). A standard hematologist-oncologist would be better than just a standard oncologist, but your husband's case seems complicated enough that it would particularly benefit from having a specialist look over his results and perform additional testing.
Let us know if you have any additional questions, and please keep us updated on what you find out.
Re: Husband may have multiple myeloma
Hi again Kim,
Hope you can get to the diagnosis for your husband, who is lucky to have you helping to sort this out, as the others posting here have said.
Sometimes the abbreviation 'CRAB' is used for myeloma, or smoldering myeloma. smoldering multiple myeloma is a condition that is not yet myeloma, or may not even progress to that.
C - Calcium. Excess calcium in the blood can be due to bones dissolving.
R - Renal. The light weight proteins in the blood, which are the monoclonal ones, are not processed well by the kidneys, and can cause kidney damage.
A- Anemia. There may be a shortage of red blood cells, since the bone marrow may not be producing enough of healthy cells.
B - Bone damage. This can be seen in the form of osteopenia, lytic lesions, or even fractures, as the bone is destroyed by the myeloma.
It sounds like you have an astute and concerned family physician, and possibly he could also refer you to an hematological oncologist for investigations. I live in Canada also (in Alberta) and I think that the system of referring patients would be similar in our two provinces.
Good luck to you both!
Hope you can get to the diagnosis for your husband, who is lucky to have you helping to sort this out, as the others posting here have said.
Sometimes the abbreviation 'CRAB' is used for myeloma, or smoldering myeloma. smoldering multiple myeloma is a condition that is not yet myeloma, or may not even progress to that.
C - Calcium. Excess calcium in the blood can be due to bones dissolving.
R - Renal. The light weight proteins in the blood, which are the monoclonal ones, are not processed well by the kidneys, and can cause kidney damage.
A- Anemia. There may be a shortage of red blood cells, since the bone marrow may not be producing enough of healthy cells.
B - Bone damage. This can be seen in the form of osteopenia, lytic lesions, or even fractures, as the bone is destroyed by the myeloma.
It sounds like you have an astute and concerned family physician, and possibly he could also refer you to an hematological oncologist for investigations. I live in Canada also (in Alberta) and I think that the system of referring patients would be similar in our two provinces.
Good luck to you both!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Husband may have multiple myeloma
Thank you all for your responses and recommendations.
Tonight we had a doctor's appointment with the family physician to review most recent bloodwork. It was an "ok" appointment. Doctor does not like the abnormal IgA band. He stated that he is at a stage of being out of his level of expertise. He is referring hubby to a hematologist / oncologist at the cancer center.
He does not want to do anymore testing, other than monitoring. Wants to leave it up to the expert. So, in a way, a disappointing appointment, but ... still moving forward in a positive medical direction.
Thank you all again for suggestions! I am hoping that hubby can get in quickly to the center (we are a month so far, just waiting for a referral to the endocrinologist ... don't even have a scheduled appointment yet). So, feeling worried that this referral may take a while too.
Regards.
Kim
Tonight we had a doctor's appointment with the family physician to review most recent bloodwork. It was an "ok" appointment. Doctor does not like the abnormal IgA band. He stated that he is at a stage of being out of his level of expertise. He is referring hubby to a hematologist / oncologist at the cancer center.
He does not want to do anymore testing, other than monitoring. Wants to leave it up to the expert. So, in a way, a disappointing appointment, but ... still moving forward in a positive medical direction.
Thank you all again for suggestions! I am hoping that hubby can get in quickly to the center (we are a month so far, just waiting for a referral to the endocrinologist ... don't even have a scheduled appointment yet). So, feeling worried that this referral may take a while too.
Regards.
Kim
Re: Husband may have multiple myeloma
Kim,
Wow, that is a long wait under the circumstances.
Maybe you are already doing this, but perhaps it makes sense to assume celiac disease might be in play here (along with something like MGUS or SMM) and to go on a gluten-free diet in the meantime?
Wow, that is a long wait under the circumstances.
Maybe you are already doing this, but perhaps it makes sense to assume celiac disease might be in play here (along with something like MGUS or SMM) and to go on a gluten-free diet in the meantime?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Husband may have multiple myeloma
Which Cancer Centre, Kim ? (I am in Ontario as well)
I am surprised a hematologist did not visit your husband for a consult when we as hospitalized in the larger city.
Tell your husband not to underplay (or overplay, but I doubt that is the problem) his symptoms, if something hurts at a 6/10, then he needs to say so rather than "it bugs me a little."
I am surprised a hematologist did not visit your husband for a consult when we as hospitalized in the larger city.
Tell your husband not to underplay (or overplay, but I doubt that is the problem) his symptoms, if something hurts at a 6/10, then he needs to say so rather than "it bugs me a little."
-
Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Husband may have multiple myeloma
Hi Kim,
My main symptoms were shoulder pains. On the left, then on the right, and back and forth. Was sent to physical therapy and stopped going there. Requested an MRI because I eventually had elbow pain, carpal tunnel-like symptoms on and off.
The MRI showed that I had a plasmacytoma and two of my vertebrae were already affected. Needed a corpectomy as soon as yesterday. After surgery, I felt like new. Oh, about 6 or 7 months prior to the shoulder pains, I had tingling in one of my legs and some rib pain occasionally. especially at night in bed. These pains subsided.
I don't want to worry you, but make sure to find out what causes the shoulder pain!
My main symptoms were shoulder pains. On the left, then on the right, and back and forth. Was sent to physical therapy and stopped going there. Requested an MRI because I eventually had elbow pain, carpal tunnel-like symptoms on and off.
The MRI showed that I had a plasmacytoma and two of my vertebrae were already affected. Needed a corpectomy as soon as yesterday. After surgery, I felt like new. Oh, about 6 or 7 months prior to the shoulder pains, I had tingling in one of my legs and some rib pain occasionally. especially at night in bed. These pains subsided.
I don't want to worry you, but make sure to find out what causes the shoulder pain!
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
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