Dear Dr. Voorhees,
Thank you so much for your response! I really appreciate it. I think that you described is what my doctor explained to me as well, but I am not sure. I was honestly so shocked because I thought the plasma cells would be below 5% since my mspike was so low. I think my eyes glazed over at one point during the appointment! Honestly, reading the biopsy report is like reading another language to me! I have pasted parts (that I think must be important) and are related to what you wrote above.
BONE MARROW BIOPSY:
Mildly hypercellular marrow (40% fat).
Approximately 10-15% of the cellularity (6-8% of intertrabecular space) is
comprised of a population of plasma cells, occurring singly and in small
clusters.
Immunoperoxidase studies performed on paraffin sections reveal a predominance
of cytoplasmic reactivity of the CD138 positive plasma cells for immunoglobulinlambda light chain. Fewer plasma cells exhibit cytoplasmic reactivity for immunoglobulin kappa light chain.
Of the remaining cellularity:
Erythroid elements are present in normal proportion and exhibit maturation.
Myeloid elements are present in normal proportion and exhibit maturation.
Blasts comprise less than 5% of the marrow cellularity
Megakaryocytes are present in normal numbers and include occasional small
hypolobated forms.
Scattered lymphocytes are seen (non-diagnostic).
Bone trabeculae exhibit focal osteoblastic activity.
Giemsa stain examined for final diagnosis of bone marrow biopsy.
The aspirate smear findings, which are in accordance with those noted at the
DFCI, are of a cellular, spicular smear showing maturing trilineage
hematopoiesis with atypical plasma cells, including nucleolated forms.
Bone Marrow aspirate reading at DFCI +++++
Differential count:
Cellularity : OK
Megakaryocytes : Present
Blasts : 1%
Promyelocytes : 1%
Myeloid : 62%
Erythroid : 26%
Lymphocytes : 7%
Plasma cells : 3%; (focally higher); including atypical forms
Others : -; Touch prep also examined
M:E ratio : 2.3:1
Marrow with maturing trilineage hematopoiesis and focally increased plasma
cells including atypical forms SUGGESTIVE OF INVOLVEMENT BY A PLASMA CELL
DISORDER.
Flow cytometric analysis performed at BWH (+++++++ 07/03/2012) showed A
population of plasma cells (CD138 and CD38 positive, CD56 negative) shows
cytoplasmic lambda light chain staining, consistent with involvement by a
plasma cell neoplasm.
Is this consistent with what you wrote regarding my biopsy results? Thank you again so much for your help!
Elizabeth
Forums
Re: 28 Female - Borderline MGUS/SMM
Dear Elizabeth,
I am not accustomed to this way of reporting. The intertrabecular space is the area of the bone marrow cavity where the marrow elements that make blood cells reside. This is where you would expect to see myeloma (or MGUS). As such, I would think that the 6-8% number is the most relevant. I would clarify that with your physician if I were you. Regardless, I still think things are not looking dire by any of the stretch of the imagination. The only difficult thing about your circumstance is the uncertain degree of risk of progression if you become pregnant. If things are stable come December and you want to start a family, I would be supportive.
Good luck and keep us posted!
Pete V.
I am not accustomed to this way of reporting. The intertrabecular space is the area of the bone marrow cavity where the marrow elements that make blood cells reside. This is where you would expect to see myeloma (or MGUS). As such, I would think that the 6-8% number is the most relevant. I would clarify that with your physician if I were you. Regardless, I still think things are not looking dire by any of the stretch of the imagination. The only difficult thing about your circumstance is the uncertain degree of risk of progression if you become pregnant. If things are stable come December and you want to start a family, I would be supportive.
Good luck and keep us posted!
Pete V.
-
Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: 28 Female - Borderline MGUS/SMM
Thank you again, I really appreciate your response! December can't come soon enough...
-
elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: 28 Female - Borderline MGUS/SMM
I wanted to give a little update on my status. I had the repeat biopsy in December (biopsy in July showed 10-15% plasma cells) and unfortunately my bone marrow biopsy was still 10% confirming the smoldering myeloma diagnosis.
BONE MARROW ASPIRATE REPORT
RESULT:
Differential count:
Cellularity : OK/Increased. Spicules present
Megakaryocytes : Present
Blasts : 1%
Promyelocytes : -
Myeloid : 62%
Erythroid : 25%
Lymphocytes : 11%
Plasma cells : 1%; rare binucleate forms
Others : -; Touch prep also examined
M:E ratio : 2.4:1
INTERPRETATION:
Maturing trilineage hematopoiesis with 1% plasma cells. See biopsy, flow cytometry and cytogenetics for definitive evaluation of plasma cell population.
INTERPRETATION:
Flow cytometric analysis of this bone marrow aspirate reveals a minute population of plasma cells that is positive for CD38 and CD138, negative for CD56, and shows apparent cytoplasmic lambda light chain staining, HIGHLY SUSPICIOUS FOR INVOLVEMENT BY A PLASMA CELL NEOPLASM. Correlation with morphologic findings (BS-12-56932) is required for further evaluation.
PATHOLOGIC DIAGNOSIS:
BONE MARROW BIOPSY:
MOST CONSISTENT WITH INVOLVEMENT BY A PLASMA CELL NEOPLASM (see NOTE)
Hemorrhagic moderately hypercellular marrow (20% fat/80% cellular).
Approximately 10% of the cellularity (5% of intertrabecular space) is comprised of plasma cells that occur singly and in small clusters.
Immunoperoxidase and in-situ hybridization studies performed on paraffin sections reveal that the CD138-positive plasma cells express excess lambda light chain over kappa light chains.
Of the remaining cellularity:
Erythroid elements are present in normal proportion and exhibit maturation.
Myeloid elements are present in normal proportion, exhibit maturation and include increased number of early and eosinophilic forms.
Blasts comprise less than 5% of the marrow cellularity.
Bone trabeculae exhibit focal osteoblastic and focal osteoclastic activity.
Giemsa stains were examined.
The aspirate smear findings are of a cellular, spicular smear showing maturing trilineage hematopoiesis with mildly increased number of plasma cells.
Blasts are not increased.
Flow cytometric analysis performed at BWH (BL-12-R37062, 12/10/2012) showed a minute population of plasma cells that is positive for CD38 and CD138, negative for CD56, and shows apparent cytoplasmic lambda light chain staining, HIGHLY SUSPICIOUS FOR INVOLVEMENT BY A PLASMA CELL NEOPLASM.
NOTE:
The overall findings are a moderately hypercellular marrow showing maturing trilineage hematopoiesis and 10% plasma cells with excess lambda light chain; focal osteoclastic activity is present. Although definitive light chain restriction is not observed by in-situ hybridizations studies, in light of IgG lambda monoclonal gammopathy, the overall findings are MOST CONSISTENT WITH INVOLVEMENT BY A PLASMA CELL NEOPLASM. Correlation with clinical, laboratory, cytogenetic, and radiologic findings is recommended for further classification.
My doctor was able to consult with some of his colleagues at Mayo and he said anecdotally there have been cases when smoldering myeloma has not been accelerated by the advent pregnancy, although in other cases this has been seen. However, staining on my plasma cells for estrogen and progesterone receptors was entirely negative. Good news for me in terms of planning a family! Careful observation will continue and I will just be monitored very carefully if/when I become pregnant.
A HUGE thank you to Dr. Voorhees and the members here for the support!
BONE MARROW ASPIRATE REPORT
RESULT:
Differential count:
Cellularity : OK/Increased. Spicules present
Megakaryocytes : Present
Blasts : 1%
Promyelocytes : -
Myeloid : 62%
Erythroid : 25%
Lymphocytes : 11%
Plasma cells : 1%; rare binucleate forms
Others : -; Touch prep also examined
M:E ratio : 2.4:1
INTERPRETATION:
Maturing trilineage hematopoiesis with 1% plasma cells. See biopsy, flow cytometry and cytogenetics for definitive evaluation of plasma cell population.
INTERPRETATION:
Flow cytometric analysis of this bone marrow aspirate reveals a minute population of plasma cells that is positive for CD38 and CD138, negative for CD56, and shows apparent cytoplasmic lambda light chain staining, HIGHLY SUSPICIOUS FOR INVOLVEMENT BY A PLASMA CELL NEOPLASM. Correlation with morphologic findings (BS-12-56932) is required for further evaluation.
PATHOLOGIC DIAGNOSIS:
BONE MARROW BIOPSY:
MOST CONSISTENT WITH INVOLVEMENT BY A PLASMA CELL NEOPLASM (see NOTE)
Hemorrhagic moderately hypercellular marrow (20% fat/80% cellular).
Approximately 10% of the cellularity (5% of intertrabecular space) is comprised of plasma cells that occur singly and in small clusters.
Immunoperoxidase and in-situ hybridization studies performed on paraffin sections reveal that the CD138-positive plasma cells express excess lambda light chain over kappa light chains.
Of the remaining cellularity:
Erythroid elements are present in normal proportion and exhibit maturation.
Myeloid elements are present in normal proportion, exhibit maturation and include increased number of early and eosinophilic forms.
Blasts comprise less than 5% of the marrow cellularity.
Bone trabeculae exhibit focal osteoblastic and focal osteoclastic activity.
Giemsa stains were examined.
The aspirate smear findings are of a cellular, spicular smear showing maturing trilineage hematopoiesis with mildly increased number of plasma cells.
Blasts are not increased.
Flow cytometric analysis performed at BWH (BL-12-R37062, 12/10/2012) showed a minute population of plasma cells that is positive for CD38 and CD138, negative for CD56, and shows apparent cytoplasmic lambda light chain staining, HIGHLY SUSPICIOUS FOR INVOLVEMENT BY A PLASMA CELL NEOPLASM.
NOTE:
The overall findings are a moderately hypercellular marrow showing maturing trilineage hematopoiesis and 10% plasma cells with excess lambda light chain; focal osteoclastic activity is present. Although definitive light chain restriction is not observed by in-situ hybridizations studies, in light of IgG lambda monoclonal gammopathy, the overall findings are MOST CONSISTENT WITH INVOLVEMENT BY A PLASMA CELL NEOPLASM. Correlation with clinical, laboratory, cytogenetic, and radiologic findings is recommended for further classification.
My doctor was able to consult with some of his colleagues at Mayo and he said anecdotally there have been cases when smoldering myeloma has not been accelerated by the advent pregnancy, although in other cases this has been seen. However, staining on my plasma cells for estrogen and progesterone receptors was entirely negative. Good news for me in terms of planning a family! Careful observation will continue and I will just be monitored very carefully if/when I become pregnant.
A HUGE thank you to Dr. Voorhees and the members here for the support!
-
elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: 28 Female - Borderline MGUS/SMM
I just had my 27th birthday and was diagnosed with MGUS last year. 0.37 initial Mspike but told its not a big deal by my hem/onc doc. I dont know what to think, i get sick every month with really high fevers highest recorded @ 105.3 stiff neck, swollen lymph nodes, night sweats. its been a crazy journey and i just saw him again for my 6 month spep after my BMB taken back on Oct. there is so much i just dont have the time to type it all! i am currently active duty in the US Air Force and am being medically discharged. Not for the MGUS or its associated sympoms! in fact, it was not even considered for compensation!!!!!!!! or future treatment benefits! and i worked in a government medical facility warehouse being exposed to radiation for several years.
-
grssmnperez - Name: Dan
Re: 28 Female - Borderline MGUS/SMM
Hi grssmnperez,
I'm so sorry to hear about your diagnosis and all you are going through. I haven't heard of many other people diagnosed with MGUS in their 20s. That's interesting you get fevers - I have had fevers and associated night sweats since my diagnosis. I was actually just tested for a periodic fever syndrome, but no genetic mutations were found.
Best wishes to you!
Elizabeth
I'm so sorry to hear about your diagnosis and all you are going through. I haven't heard of many other people diagnosed with MGUS in their 20s. That's interesting you get fevers - I have had fevers and associated night sweats since my diagnosis. I was actually just tested for a periodic fever syndrome, but no genetic mutations were found.
Best wishes to you!
Elizabeth
-
elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: 28 Female - Borderline MGUS/SMM
Hi people!
I am 28 and had been diagnosed with MGUS 3 months ago. In my country I think I could not get in touch with anyone with MGUS because it is so rare..I have to ask my hema in October.
I got to immunologist because I thought I had yeast infections all the time..huh..well, I thought that because of my stupid gyneacologist that was diagnosig me with "an eye method" not even using his microscop..
The test were good except they found M protein IgG lambda type
He than sent me to hematologist and he did various blood tests and 24 urine and the result was the same.
I have
IgG 19.11 (g/L 7.0-16) IS THIS THE MEASURE FOR M PROTEIN AND IS THAT like level 1 or higher?? I dont understand that as much..
Albumin 51.8 ( % 55.8-66.1)
ALFA1 3.0 (% 2.9-4.9)
ALFA2 8.3 (% 7.1-11.8)
BETA 31.5(%8.4-13.1)
GAMMA 5.4 (%11.1-18.8)
RATIO 1.07 (0.8-2)
urine test
(S)easy kappa chains Ig 14.50 (mg/L 3.30-19.40)
(S)easy lambda chain Ig27 (mg/L 5.71-26.30)
(S)ratio 0.54 (0.26-1.65)
(dU)easy chain Ig kappa <6.25 mg/L (1.35-24.19)
(dU) easy chain Ig lambda <5.09 (0.24-6.66)
ratio 1.22 (2.04-10.37)
All my other blood test are mostly fine. Calcium, potassium, coper are fine. Hormones of thyroid Gland TSH, T3, T4 are fine.
My hematologist didnt want me go through all the other test as biopsy and MRI beacuse he thinks I dont need to yet. I will monitore this every six months.
My problems is that I have itch on my "sensitive parts", last 5-6 years almost every menstrual cycle in my luteal phase. I changed my gynecologist and went through all tests regarding STDs and all came negative but he still thinks maybe is because of candida(that is negative..doh)..
For 10 years because of an old gynecologist I thought I had problems with candida and he didnt even look under the microscop..hate him..last two test when I had itch and a a discharge came negative so it is not candida.
Now I went to dermatologyst who thinks I am maybe allergic to my progesterone in the luteal phase and I am waiting for my test now. I only got my estrogen and LH levels that are OK, and FSH level is a bit high.
Also..this may have more with MGUS..or not..
Last 3 months I have more and more back pain. In cervical spine(here I have pain few times a year but it would usually pass) and in LS joint and I have tingling in my right fist especialy after of hours using a computer mouse. I went to physiatrist and I have to do RTG of spine and EMNG of upper extremities.
This is something new I didnt still told to my hematologist because I am going to him in October. Last 10 months I got this job where I have to sit a lot and I work on computer.
I had car accident 7 years ago. It hit me in my pelvis and rotated 2 times in the air and I hit with my left side forehead and had headaches for a year, had to took pills for 4 years to eliminate the danger of getting epilepsy attack(because I had fever convulsion at age of 1)..
Except that In last 10 years I had unusual minor fevers in my luteal phase(I dont measure any more, but ones it was the worst it lasted for six months and I was tired and sleepy all the time), my hair was falling off 5 years ago for six months without uncovered reason than grow back but it is not thick as it was, I had HPV high risk and low risk, ureaplasmu, CIN II, I got sick 2 times with flu after getting shot against flu, ..I had tonsillitis 2-3 times a year till the age of 17 and was given antibiotics till 17 2-3 time a year :/(I removed them when I was 17, I had lousy doctor that didnt sent me to remove them sooner).
But now everything of that is mostly gone and I feel relatively OK
I dont have children yet..but after reading this I am not sure If I will have them..will see.
Do you have some advice for me? Do I have to do MRI or biopsy?
Can the M protein be removed from blood with a healthy food?
And I have question about my feritin level that is 16 and it is normaln to be within 10-128 range..but isnt that a bit low? Once I had low iron but now it is fine.
What about you Elizabeth? How are you doing?
I am 28 and had been diagnosed with MGUS 3 months ago. In my country I think I could not get in touch with anyone with MGUS because it is so rare..I have to ask my hema in October.
I got to immunologist because I thought I had yeast infections all the time..huh..well, I thought that because of my stupid gyneacologist that was diagnosig me with "an eye method" not even using his microscop..
The test were good except they found M protein IgG lambda type
He than sent me to hematologist and he did various blood tests and 24 urine and the result was the same.
I have
IgG 19.11 (g/L 7.0-16) IS THIS THE MEASURE FOR M PROTEIN AND IS THAT like level 1 or higher?? I dont understand that as much..
Albumin 51.8 ( % 55.8-66.1)
ALFA1 3.0 (% 2.9-4.9)
ALFA2 8.3 (% 7.1-11.8)
BETA 31.5(%8.4-13.1)
GAMMA 5.4 (%11.1-18.8)
RATIO 1.07 (0.8-2)
urine test
(S)easy kappa chains Ig 14.50 (mg/L 3.30-19.40)
(S)easy lambda chain Ig27 (mg/L 5.71-26.30)
(S)ratio 0.54 (0.26-1.65)
(dU)easy chain Ig kappa <6.25 mg/L (1.35-24.19)
(dU) easy chain Ig lambda <5.09 (0.24-6.66)
ratio 1.22 (2.04-10.37)
All my other blood test are mostly fine. Calcium, potassium, coper are fine. Hormones of thyroid Gland TSH, T3, T4 are fine.
My hematologist didnt want me go through all the other test as biopsy and MRI beacuse he thinks I dont need to yet. I will monitore this every six months.
My problems is that I have itch on my "sensitive parts", last 5-6 years almost every menstrual cycle in my luteal phase. I changed my gynecologist and went through all tests regarding STDs and all came negative but he still thinks maybe is because of candida(that is negative..doh)..
For 10 years because of an old gynecologist I thought I had problems with candida and he didnt even look under the microscop..hate him..last two test when I had itch and a a discharge came negative so it is not candida.
Now I went to dermatologyst who thinks I am maybe allergic to my progesterone in the luteal phase and I am waiting for my test now. I only got my estrogen and LH levels that are OK, and FSH level is a bit high.
Also..this may have more with MGUS..or not..
Last 3 months I have more and more back pain. In cervical spine(here I have pain few times a year but it would usually pass) and in LS joint and I have tingling in my right fist especialy after of hours using a computer mouse. I went to physiatrist and I have to do RTG of spine and EMNG of upper extremities.
This is something new I didnt still told to my hematologist because I am going to him in October. Last 10 months I got this job where I have to sit a lot and I work on computer.
I had car accident 7 years ago. It hit me in my pelvis and rotated 2 times in the air and I hit with my left side forehead and had headaches for a year, had to took pills for 4 years to eliminate the danger of getting epilepsy attack(because I had fever convulsion at age of 1)..
Except that In last 10 years I had unusual minor fevers in my luteal phase(I dont measure any more, but ones it was the worst it lasted for six months and I was tired and sleepy all the time), my hair was falling off 5 years ago for six months without uncovered reason than grow back but it is not thick as it was, I had HPV high risk and low risk, ureaplasmu, CIN II, I got sick 2 times with flu after getting shot against flu, ..I had tonsillitis 2-3 times a year till the age of 17 and was given antibiotics till 17 2-3 time a year :/(I removed them when I was 17, I had lousy doctor that didnt sent me to remove them sooner).
But now everything of that is mostly gone and I feel relatively OK
I dont have children yet..but after reading this I am not sure If I will have them..will see.
Do you have some advice for me? Do I have to do MRI or biopsy?
Can the M protein be removed from blood with a healthy food?
And I have question about my feritin level that is 16 and it is normaln to be within 10-128 range..but isnt that a bit low? Once I had low iron but now it is fine.
What about you Elizabeth? How are you doing?
-
BarbaraCro - Name: BarbaraCro
- Who do you know with myeloma?: MGUS
- Age at diagnosis: 28
Re: 28 Female - Borderline MGUS/SMM
Hi Barbara Cro, I am sorry to hear about the health problems that have been plaguing you for the past decade. I can't interpret your test results, not being a doctor, but if you did have MGUS, rest assured that is not cancer yet, and only 1% of MGUS patients progress to Myeloma every year (or to SMM).
sO, are you concerned that because of repeated infections you have a lowered immune system? I suppose that if you do have MGUS, you will be regularly monitored with blood tests and maybe other tests too. For the repeated infections, I hope that your other docs can help you out also. Best wishes to you! Hopefully someone with more knowledge than I have can interpret your blood test results for you.
sO, are you concerned that because of repeated infections you have a lowered immune system? I suppose that if you do have MGUS, you will be regularly monitored with blood tests and maybe other tests too. For the repeated infections, I hope that your other docs can help you out also. Best wishes to you! Hopefully someone with more knowledge than I have can interpret your blood test results for you.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: 28 Female - Borderline MGUS/SMM
Something I dont understand..first time I had these test in december they were like this (and I did them in another hospital than next two tests)
IGG 20.07 (7-16)
easy chain kappa 1.39 (1.7-3,7)
easy chain lambda 4.57 (0.9-2.1)
ratio 0.30 (1.35-2.65)
Then I got to imunologist and he did test all again and the came like this,
IGG 16.03 (7-16) (I dont have the results of easy chains)
ratio 1.04 (1.35-2.65)
Then he send me to hematologist and he did all again also and the results were as post above..
I am reading about ratio now..and they are saying :
"When the level of either kappa or lambda is very high and the other chain is normal or low, then the ratio is abnormal and indicates that the myeloma is active".
and
"A normal kappa/lambda ratio after treatment is a particularly good remission and is termed a stringent complete response. Normalization of the kappa/lambda ratio correlates with possible longer remissions, and studies are in progress to investigate more about the nature of this relationship."
Does this mean I maybe have multiple myeloma? How can this test be so different?
I wasnt taking any medications except an antibiotic in september and february.
IGG 20.07 (7-16)
easy chain kappa 1.39 (1.7-3,7)
easy chain lambda 4.57 (0.9-2.1)
ratio 0.30 (1.35-2.65)
Then I got to imunologist and he did test all again and the came like this,
IGG 16.03 (7-16) (I dont have the results of easy chains)
ratio 1.04 (1.35-2.65)
Then he send me to hematologist and he did all again also and the results were as post above..
I am reading about ratio now..and they are saying :
"When the level of either kappa or lambda is very high and the other chain is normal or low, then the ratio is abnormal and indicates that the myeloma is active".
and
"A normal kappa/lambda ratio after treatment is a particularly good remission and is termed a stringent complete response. Normalization of the kappa/lambda ratio correlates with possible longer remissions, and studies are in progress to investigate more about the nature of this relationship."
Does this mean I maybe have multiple myeloma? How can this test be so different?
I wasnt taking any medications except an antibiotic in september and february.
-
BarbaraCro - Name: BarbaraCro
- Who do you know with myeloma?: MGUS
- Age at diagnosis: 28
Re: 28 Female - Borderline MGUS/SMM
Hi Nancy!
Well I am not sooo worried anymore. But I am curious about this state because the doctors didnt explained me much. No one except hematologist and imunologist didt even heard about MGUS.
And I didnt have luck with doctors till now so I like to prepare by myself if I cant get answers from them.
This other troubles I am dealing with other doctors but maybe it all have to do with MGUS. I will tell the hematologist next time about my findings.
Well I am not sooo worried anymore. But I am curious about this state because the doctors didnt explained me much. No one except hematologist and imunologist didt even heard about MGUS.
And I didnt have luck with doctors till now so I like to prepare by myself if I cant get answers from them.
This other troubles I am dealing with other doctors but maybe it all have to do with MGUS. I will tell the hematologist next time about my findings.
-
BarbaraCro - Name: BarbaraCro
- Who do you know with myeloma?: MGUS
- Age at diagnosis: 28
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