Hello,
I am new here and so glad I found this site. I was diagnosed with MGUS in 2012 at the age of 27. I have an extremely long medical history but the MGUS was found when I was diagnosed with osteoporosis from menopause. The menopause was related to premature ovarian failure.
I have been seeing an oncologist every six months and most recently a few weeks ago. He drew some labs and these were the results. A CMP, CRP and a urine immunofixation were done
These were the only abnormal results
CRP was 16.6 Reference 0.0-4.9
Alkaline Phosphate 121 reference is 39-117
Urine Immunofixation was an apparent normal pattern
BUT and there is a big but.... I thought everything was fine got the results....went to my PCP for just a HRT prescription refill. She did a yearly physical and found a lump in my right breast. She was also concerned about how elevated the CRP was. I have IBS as well so assumed the CRP was elevated from the inflammation from IBS I have been flaring up recently. She said she did not think that was possible. I had a CRP done prior to this and it was in the 12 range the last time. She was going to place a call to my oncologist to find out why he drew it and what the significance it has with the MGUS diagnosis because she did not know.
So today I went for my first mammogram after a night filled without sleep.
First mammogram then the ultrasound. Both looked fairly normal but the mass looks to be on my rib. It definitely is not breast cancer but a mass of some kind, there were not really sure. Radiologist recommended a CT. Called the ONC back and he is out of town until Tuesday so I could not get an appointment until then.
I don't know how to interpret all of this. I had felt the lump but really thought it was just a rib. I have had a panic about a lump before but higher on my chest than this one and it was just a rib, so I of course just chalked it up to being paranoid. I will say now that it has been pressed and manipulated it really hurts tonight.
I just don't know what to think, the MGUS does not look like it is progressing but I don't know where to go from here or what to ask for as far as more labs or testing other than the recommended CT.
Any help would be greatly appreciated.
Forums
6 posts
• Page 1 of 1
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StephieT - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2012
- Age at diagnosis: 27
Re: MGUS - need help interpreting recent test results
Oh and my albumin was low a 3.4, somehow I missed that in the abnormal results.
I did pull out all my previous lab work and the last few times I had the urine immunofixation done they read an apparent normal imunofixation panel. There has been only once that is came back the Bence Jones Protein kappa type. Does this mean I even have MGUS?
So confused!
I did pull out all my previous lab work and the last few times I had the urine immunofixation done they read an apparent normal imunofixation panel. There has been only once that is came back the Bence Jones Protein kappa type. Does this mean I even have MGUS?
So confused!
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StephieT - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2012
- Age at diagnosis: 27
Re: MGUS - need help interpreting recent test results
Hi Stephie,
There's a lot going on here and it sounds like you are going through a lot right now. Folks on this forum can definitely help you.
Let me try to give you some direction on the MGUS side since you asked for more direction on the next steps and which lab tests to get.
You said you were previously diagnosed with MGUS in 2012.
Did you have bone marrow biopsy at that time?
The usual tests that one gets for diagnosing and monitoring any stage of multiple myeloma (including MGUS) are listed here under the LABORATORY TESTS section.
https://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1
Since you were previously diagnosed with MGUS, it would be good to seek out a hematologist/onc that specializes in multiple myeloma to do your follow up. I would also discuss whether or not your should get an updated bone marrow biopsy (see PATHOLOGY and GENETIC STUDIES in the above link).
The CRP is definitely high and this can indeed indicate active multiple myeloma, but it can also be caused by other things. A low albumin level can also suggest active multiple myeloma.
BUT you really can't draw any definitive conclusions from just a CRP, alkaline phosphate, albumin and immunofixation tests (it sounds like you were positive for Bence Jones in your other post). You need the other tests outlined above to really get the entire picture...and these need to be interpreted by somebody that really understands and lives and breathes multiple myeloma with many patients on a daily basis.
Given that there is a lump on your bone, a PET/CT is a good thing be doing at this point and I'm very happy you are scheduled for one. This should start to give you an idea if the lump is cancerous or not. PET/CT's will "light up" in areas where there are cancerous growths such as lytic bone lesions (a "bump" or "hole" in your bone) due to multiple myeloma. Will you be getting a whole-body PET/CT? This might be prudent given you had an earlier MGUS diagnosis.
Take a deep breath, seek out a specialist that lives and breathes multiple myeloma to address that side of your issue...and best of luck to you. If it does turn out to be active multiple myeloma, it is now a very treatable disease. Hope this helps.
There's a lot going on here and it sounds like you are going through a lot right now. Folks on this forum can definitely help you.
Let me try to give you some direction on the MGUS side since you asked for more direction on the next steps and which lab tests to get.
You said you were previously diagnosed with MGUS in 2012.
Did you have bone marrow biopsy at that time?
The usual tests that one gets for diagnosing and monitoring any stage of multiple myeloma (including MGUS) are listed here under the LABORATORY TESTS section.
https://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1
Since you were previously diagnosed with MGUS, it would be good to seek out a hematologist/onc that specializes in multiple myeloma to do your follow up. I would also discuss whether or not your should get an updated bone marrow biopsy (see PATHOLOGY and GENETIC STUDIES in the above link).
The CRP is definitely high and this can indeed indicate active multiple myeloma, but it can also be caused by other things. A low albumin level can also suggest active multiple myeloma.
BUT you really can't draw any definitive conclusions from just a CRP, alkaline phosphate, albumin and immunofixation tests (it sounds like you were positive for Bence Jones in your other post). You need the other tests outlined above to really get the entire picture...and these need to be interpreted by somebody that really understands and lives and breathes multiple myeloma with many patients on a daily basis.
Given that there is a lump on your bone, a PET/CT is a good thing be doing at this point and I'm very happy you are scheduled for one. This should start to give you an idea if the lump is cancerous or not. PET/CT's will "light up" in areas where there are cancerous growths such as lytic bone lesions (a "bump" or "hole" in your bone) due to multiple myeloma. Will you be getting a whole-body PET/CT? This might be prudent given you had an earlier MGUS diagnosis.
Take a deep breath, seek out a specialist that lives and breathes multiple myeloma to address that side of your issue...and best of luck to you. If it does turn out to be active multiple myeloma, it is now a very treatable disease. Hope this helps.
Last edited by Multibilly on Sat Feb 01, 2014 8:32 am, edited 2 times in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS - need help interpreting recent test results
Steph,
You have a lot going on at such a young age. I hope people here are able to help you. Since being diagnosed with MGUS, have you had a SPEP test? Or were you diagnosed just based on the bence jones? Do you know your mspike (if you have one)? I read in your other post that your MGUS was discovered when you were diagnosed with osteoporosis. Do your doctors attribute your osteoporosis solely to the premature ovarian failure (have your periods totally stopped, or are they irregular?) or is some of the bone loss due to the MGUS? How long have you been on HRT?
Good luck with the ct scan and please keep us posted.
You have a lot going on at such a young age. I hope people here are able to help you. Since being diagnosed with MGUS, have you had a SPEP test? Or were you diagnosed just based on the bence jones? Do you know your mspike (if you have one)? I read in your other post that your MGUS was discovered when you were diagnosed with osteoporosis. Do your doctors attribute your osteoporosis solely to the premature ovarian failure (have your periods totally stopped, or are they irregular?) or is some of the bone loss due to the MGUS? How long have you been on HRT?
Good luck with the ct scan and please keep us posted.
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Anonymous45
Re: MGUS - need help interpreting recent test results
Did you have bone marrow biopsy at that time?
No I did not have a bone marrow biopsy, I have never had one.
The immunofixation urine was positive for Bence Jone Proteins only once at initial diagnosis in 2012, since then it has not been detected.
Yes I had SPEP at initial diagnosis but there was no M-Spike detected, so I think the diagnosis was just from the positive Bence Jones.
Yes the osteporsis was thought the be due to the premature ovarian failure. I started HRT 2 years ago and am using the Nuvaring. I should have been on it a lot longer but at 20 years old you think your invincable and nothing is ever going to happen, so i just never took anyones advice. I went to my PCP in 2012 and asked for another bone density, I had one in 2008 that showed ostepenia. They checked it and obviously it had progressed. Hence the bone specialist appointment. They did the urine immunofixation to rule anything else out and I came back positive for the bence jones. I have not had another bone density done since that time. They recommended Ca and Vit D supplements which I have been taking and then follow up with the oncologist.
First time I went to the ONC I did a skeletal survey which did not show anything except some curvature of C4-C5. I had the urine immunofixation and the SPEP UPEP done at that time as well and it came back positive for Bence Jones.
The POF started at age 18. I have had a number or bowel surgeries initially for a malrotation but since I have had 7 more due to adhesions most recently 2011. I had sporatic menstrual period and then it just stopped. Hormone levels were checked and i was found to be menopausal. I went to an endocrinologist and had genetic testing but I from what I remember it all came back normal. Try going through menopause at 18, it made me crazy, so I really dont remember a lot from that time!
Thanks so much for the information I will be looking at it closely. I am going to look into a myeloma specialist here in Denver if anyone has any referals let me know.
Thanks again this has just been such rollercoaster!
No I did not have a bone marrow biopsy, I have never had one.
The immunofixation urine was positive for Bence Jone Proteins only once at initial diagnosis in 2012, since then it has not been detected.
Yes I had SPEP at initial diagnosis but there was no M-Spike detected, so I think the diagnosis was just from the positive Bence Jones.
Yes the osteporsis was thought the be due to the premature ovarian failure. I started HRT 2 years ago and am using the Nuvaring. I should have been on it a lot longer but at 20 years old you think your invincable and nothing is ever going to happen, so i just never took anyones advice. I went to my PCP in 2012 and asked for another bone density, I had one in 2008 that showed ostepenia. They checked it and obviously it had progressed. Hence the bone specialist appointment. They did the urine immunofixation to rule anything else out and I came back positive for the bence jones. I have not had another bone density done since that time. They recommended Ca and Vit D supplements which I have been taking and then follow up with the oncologist.
First time I went to the ONC I did a skeletal survey which did not show anything except some curvature of C4-C5. I had the urine immunofixation and the SPEP UPEP done at that time as well and it came back positive for Bence Jones.
The POF started at age 18. I have had a number or bowel surgeries initially for a malrotation but since I have had 7 more due to adhesions most recently 2011. I had sporatic menstrual period and then it just stopped. Hormone levels were checked and i was found to be menopausal. I went to an endocrinologist and had genetic testing but I from what I remember it all came back normal. Try going through menopause at 18, it made me crazy, so I really dont remember a lot from that time!
Thanks so much for the information I will be looking at it closely. I am going to look into a myeloma specialist here in Denver if anyone has any referals let me know.
Thanks again this has just been such rollercoaster!
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StephieT - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2012
- Age at diagnosis: 27
Re: MGUS - need help interpreting recent test results
Ah, you are in Denver. I will send you a private message with a couple of Colorado docs I would recommend seeing as I live in Colorado. Best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
6 posts
• Page 1 of 1