Hi there,
I have only posted once on this board back when I first found out I had MGUS last summer (2012). At that time my oncologist told me that the M-protein was too small to be quantified and to come back in a year. My M-protein was previously a value of 3 g/dL (not 0.3 g/dL).
However, I am now feeling a bit alone when it comes to dealing with the diagnosis of MGUS. Firstly, I have been told that I should have no symptoms with MGUS. This confuses me because the symptoms are what led me to visit my doctor in the first place. The only thing that was found at the time was low B12. I had also started to experience stomach issue (heartburn, food intolerances etc.).
I am fairly young (36) and I was told that it is rare for someone my age to have it (although I feel I have had it for 5-10 years). I was told that it might not develop into anything for another 10-20 years and to just get on with life. However, I often find myself analyzing what I did wrong and I find it hard to get on with life when I feel like I am not the typical patient that they are used to dealing with. I also don't know what the warning signs are (I already have symptoms, so how do I know)?
Also, I am finding it hard for other people to understand that I sometimes don’t feel well and that I am still scared. Most of the time I am positive and upbeat but I struggle a little when I’m not well. Is it normal to have a period where you feel well and then a period where you don’t?
Also, I'm wondering if I should start a family if I have MGUS
June 2012:
Total Protein=72 G/L (60-80)
Alpha 1 Glob.=2 G/L (1-4)
Alpha 2 Glob.=9 G/L (4-10)
Beta Globulin=7 G/L (5-12)
Gamma Globulin=12 G/L (6-16)
ELECRO COMMENT: M-protein previously identified
IGG=15.20 G/L (6.35-14.65) COMMENT: HIGH
IGA=1.45 G/L (0.70-3.52)
IGM=0.85 G/L (0.41-2.07)
MCH=32.2 pg (27-32) COMMENT: HIGH
ABSOLUTE NEUTS=1.9 (2.0-7.5 X10 9/L) COMMENT: LOW
November 28, 2011:
Total Protein=65 (60-80.00)
Alpha-1=2 (1-3.00)
Alpha-2=7 (5-10.00)
Beta=6 (5-12.00)
Gamma Globulin=9 (6-14.00)
M1 Protein=3 (H) (0-.0.00).
M1 INTERPRETATION: There appears to be an M-Protein present. Further evaluation of this specimen for quantification of serum immunoglobulins and immunofixation electrophoresis can be requested.
Protein Urine=<0.04
No Free Light Chains observed by immunofixation.
IGM=0.73 (0.63-2.77)
October 2010:
Total Protein=77 G/L (ref. range is 60.0-82.0)
Alpha-1=2.2 G/L (1.0-2.2)
Alpha-2=9.6 G/L (5.0-9.2)
Beta=8.5 G/L (5.5-9.8)
G-Globulin=12.6 G/L (5.1-13.2)
COMMENTS: PEP shows the presence of a homogeneous band in the back gamma globulin region. It also shows slightly increased Alpha-2 globulin. Suggest immunoglobulin quantitations as well as serum and urine immunoelectrophoresis.
IGG=15.70 G/L (5.64-17.65)
IGA=1.86 G/L (0.85-3.85)
IGM=0.87 G/L (0.45-2.50)
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cjd - Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 35
Re: Feel scared and alone
Hi C,
I am 38 and was diagnosed April 25 this year with MGUS. I am also not a "typical" patient. I have some other complex medical issues and I'm not sure if any of the specialist I have seen have been able to definativley say this symptom goes with this or that abnormality. Medicine isn't exact. It's correlating individual history, lab tests, symptoms, and sometimes things just don't match up. It doesn't mean that your symptoms are not related to MGUS, it just means that the doctor's know that typically, in a majority of patients, these are the features or symptoms to look for. For MGUS it happens to be related more to lab work than symptoms for a diagnoses. For multiple myeloma, the doctor's look for CRAB features, which happen to be more symptomatic.
I found it interesting that you said "I often find myself analyzing what I did wrong". You didn't do anything "wrong" to get MGUS, and I don't think there is anything you can do to prevent it from progressing, IF that is what it is going to do. The best any of us can do is make healthy choices today-in this moment.
It is scary to told you have a higher than normal risk for progression to cancer, but rather than focus on what could happen, I choose to focus on that fact that right now, I do not have cancer. I think it's normal to have days that you are down and the worry intrudes more. I know that I am much more active/involved/worried when I am waiting on test results or have an upcoming appointment with a doctor, which is where I am at right now. But the bottom line is, we have more to gain in life when we hang up the phone, than we do listening to elevator music on hold.
I am 38 and was diagnosed April 25 this year with MGUS. I am also not a "typical" patient. I have some other complex medical issues and I'm not sure if any of the specialist I have seen have been able to definativley say this symptom goes with this or that abnormality. Medicine isn't exact. It's correlating individual history, lab tests, symptoms, and sometimes things just don't match up. It doesn't mean that your symptoms are not related to MGUS, it just means that the doctor's know that typically, in a majority of patients, these are the features or symptoms to look for. For MGUS it happens to be related more to lab work than symptoms for a diagnoses. For multiple myeloma, the doctor's look for CRAB features, which happen to be more symptomatic.
I found it interesting that you said "I often find myself analyzing what I did wrong". You didn't do anything "wrong" to get MGUS, and I don't think there is anything you can do to prevent it from progressing, IF that is what it is going to do. The best any of us can do is make healthy choices today-in this moment.
It is scary to told you have a higher than normal risk for progression to cancer, but rather than focus on what could happen, I choose to focus on that fact that right now, I do not have cancer. I think it's normal to have days that you are down and the worry intrudes more. I know that I am much more active/involved/worried when I am waiting on test results or have an upcoming appointment with a doctor, which is where I am at right now. But the bottom line is, we have more to gain in life when we hang up the phone, than we do listening to elevator music on hold.
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kristina - Name: Kristina
- Who do you know with myeloma?: MGUS
- When were you/they diagnosed?: April 25th 2013 KU Oncology Center
- Age at diagnosis: 38
Re: Feel scared and alone
Hey there C,
When I first got diagnosed with smoldering multiple myeloma, I spent a couple of weeks doing all the "what ifs" trying to figure out what part of my lifestyle may have contributed to this disease. It is a natural thing to do, but it is also something that just won't get you anywhere, even if they are able to prove some day that multiple myeloma is caused by outside factors and not genetics. What's the point? It's not like you can turn back the hands of time. This logic finally got my head off that endless and useless "what if" treadmill and focused me instead on thriving and doing fun things in life.
By the way, if you truly have an M-spike of 3 g/dL, that is not exactly a trivial level of monoclonal protein. Based on that one stat, you would be straddling between MGUS and smoldering multiple myeloma, depending on what your clonal plasma cell percentage is in your bone marrow. If you haven't done so already, you should really get a bone marrow biopsy, Freelite test, skeletal survey xray, etc , to know just where things stand.
I assume you already had a basic metabolic panel to check out your calcium, hemoglobin, renal function, etc?
Good luck to you.
When I first got diagnosed with smoldering multiple myeloma, I spent a couple of weeks doing all the "what ifs" trying to figure out what part of my lifestyle may have contributed to this disease. It is a natural thing to do, but it is also something that just won't get you anywhere, even if they are able to prove some day that multiple myeloma is caused by outside factors and not genetics. What's the point? It's not like you can turn back the hands of time. This logic finally got my head off that endless and useless "what if" treadmill and focused me instead on thriving and doing fun things in life.
By the way, if you truly have an M-spike of 3 g/dL, that is not exactly a trivial level of monoclonal protein. Based on that one stat, you would be straddling between MGUS and smoldering multiple myeloma, depending on what your clonal plasma cell percentage is in your bone marrow. If you haven't done so already, you should really get a bone marrow biopsy, Freelite test, skeletal survey xray, etc , to know just where things stand.
I assume you already had a basic metabolic panel to check out your calcium, hemoglobin, renal function, etc?
Good 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
Re: Feel scared and alone
Hi cjd,
Please don't be scared and you are never alone!
I have looked over your results was wondering the same things that Multibilly mentioned about further testing. It is important to talk to your doctor about having a CBC, skeletal survey, etc. performed.
My father has had MGUS for over 10 years and has recently been diagnosed with a plasmacytoma in his left scapula (shoulder). He started radiation this week and we are waiting for results of an MRI of his spine.
Treatments for plasma cell disorders has come a long way in the past few years! Hang onto the thought that you may never progress, but it is better to have all of the appropriate testing done and be proactive - better to be safe than sorry!
Please believe what Kristina told you. This is not your fault and you did not do anything wrong! Hang in there.
georgia
Please don't be scared and you are never alone!
I have looked over your results was wondering the same things that Multibilly mentioned about further testing. It is important to talk to your doctor about having a CBC, skeletal survey, etc. performed.
My father has had MGUS for over 10 years and has recently been diagnosed with a plasmacytoma in his left scapula (shoulder). He started radiation this week and we are waiting for results of an MRI of his spine.
Treatments for plasma cell disorders has come a long way in the past few years! Hang onto the thought that you may never progress, but it is better to have all of the appropriate testing done and be proactive - better to be safe than sorry!
Please believe what Kristina told you. This is not your fault and you did not do anything wrong! Hang in there.
georgia
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georgia - Name: georgia
- Who do you know with myeloma?: My dad :(
- When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
- Age at diagnosis: 64
Re: Feel scared and alone
What you are explaining sounds a lot like me. I am a 36 year old female. I have smoldering multiple myeloma, but I am fatigued and chronic fever, memory loss, headaches and generally unwell. They really should do a bone marrow biopsy. I have been confused as well because my quality of life has drastically gone down hill. My specialist is helping me figure out if something else is going on. I am glad I'm not in active stage. And at least they found it early and we can be watched carefully.
You definitely aren't alone, but I understand how scary it is. This is all new to me too. I hope you have a good doctor. Maybe go for a second opinion. I was first diagnosed with multiple myeloma and my oncologist had the treatment plan for me then I saw a myeloma specialist and she put me into the smoldering category. My first oncologist /hematologist is a very good doctor, but it really takes a specialist, and he was right in sending me for the second opinion.
Hoping the best,
Heather
You definitely aren't alone, but I understand how scary it is. This is all new to me too. I hope you have a good doctor. Maybe go for a second opinion. I was first diagnosed with multiple myeloma and my oncologist had the treatment plan for me then I saw a myeloma specialist and she put me into the smoldering category. My first oncologist /hematologist is a very good doctor, but it really takes a specialist, and he was right in sending me for the second opinion.
Hoping the best,
Heather
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
Re: Feel scared and alone
Thank you all for your kind words and reassurance.
When I was first diagnosed, I approached it with a positive attitude (I had eventually got someone to pay attention to my health concerns, was thankful that I was being monitored and it made me reevaluate what was important in life). However, I seem to have hit a bump in the road recently. Thank you for suggesting I go back for more tests (bone marrow biopsy, skeletal survey x-rays, etc) as I've only had bloodwork done (although I did check with my doctor and he confirmed my M-protein value was 3 g/dL on one of my previous tests). Thank you also for your suggestion regarding a second opinion and making sure I see a specialist. I think this is something that I should really look into.
You are all wonderful and I thank you for responding so fast.
cjd
When I was first diagnosed, I approached it with a positive attitude (I had eventually got someone to pay attention to my health concerns, was thankful that I was being monitored and it made me reevaluate what was important in life). However, I seem to have hit a bump in the road recently. Thank you for suggesting I go back for more tests (bone marrow biopsy, skeletal survey x-rays, etc) as I've only had bloodwork done (although I did check with my doctor and he confirmed my M-protein value was 3 g/dL on one of my previous tests). Thank you also for your suggestion regarding a second opinion and making sure I see a specialist. I think this is something that I should really look into.
You are all wonderful and I thank you for responding so fast.
cjd
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cjd - Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 35
Re: Feel scared and alone
Nope, not alone, there are a few of us 30 somethings on here facing similar questions.
Family planning is a big question mark in my husband's and my life right now. To try or not to try.
In my case, I am 35, I was diagnoses with full-blown multiple myeloma when I was 32, but my specialist looked up old blood work from two years prior (basic blood work for foot surgery I had) and confirmed there was en elevated protein then, and also based on my long standing symptoms said I had had multiple myeloma for at least two years, and probably started with MGUS in my mid 20's.
I didn't blame myself so much as thought "Why me?"!
I am feeling pretty good these days, stable remission right now, and my husband and I are seeing a fertility doctor at the end of the month regarding having a family.
My husband and I have already had some "big talks" and he is prepared to take on a lot of responsibility if my multiple myeloma comes back. Also we have come to the acceptance I might not be here to see my kid grow up, but I don't want to rob him of the chance to have a family.
Family planning is a big question mark in my husband's and my life right now. To try or not to try.
In my case, I am 35, I was diagnoses with full-blown multiple myeloma when I was 32, but my specialist looked up old blood work from two years prior (basic blood work for foot surgery I had) and confirmed there was en elevated protein then, and also based on my long standing symptoms said I had had multiple myeloma for at least two years, and probably started with MGUS in my mid 20's.
I didn't blame myself so much as thought "Why me?"!
I am feeling pretty good these days, stable remission right now, and my husband and I are seeing a fertility doctor at the end of the month regarding having a family.
My husband and I have already had some "big talks" and he is prepared to take on a lot of responsibility if my multiple myeloma comes back. Also we have come to the acceptance I might not be here to see my kid grow up, but I don't want to rob him of the chance to have a family.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Feel scared and alone
You are not alone! But I do totally get it. This is scary stuff. I posted a while back re: pregnancy and MGUS, smoldering multiple myeloma, and multiple myeloma.
I was diagnosed with MGUS in 2009 when I was 25. I was told I was low risk for progression and was monitored every 3-6 months. I was kind of freaked out by the diagnosis, but wasn't going to let it rule my life.
About a year ago, at one of my appointments, I discussed the possibility of starting a family. The research fellow I met with prior to seeing my doctor told me that if I wanted to have kids, I needed to make sure to have them "sooner than later."
Whaaat? I was 28 and absolutely horrified and devastated.
When I saw my specialist he said I should hopefully be "fine" to have kids, but there was risk of progression during pregnancy. He wanted to do some repeat tests: PET/CT, bone marrow biopsy, etc. to be "super careful" before I got pregnant. These tests unfortunately then reclassified me as smoldering myeloma, which was another blow, and my specialist was very worried about pregnancy progressing my condition.
Very long story short: They stained my plasma cells to see if they were hormonally receptor positive or responsive for estrogen and progesterone. They were negative, which was good news. My specialist consulted with some colleagues and said that, anecdotally, there have been cases when smoldering myeloma has not been accelerated by the advent of pregnancy, although in other cases this has been seen. I think there are only about 20 case studies / reports of women with MGUS / multiple myeloma and pregnancy. No one can really tell you definitively that you are going to be completely fine, or that you would probably progress, as there is no research to back up either. Basically my husband and I were told we have to weigh the "risk vs. benefits" as far as having children.
I totally understand how you feel being young for this and feeling to some degree like an "anomaly". I've seen a high risk OB and a fertility specialist and neither have had a patient with MGUS, smoldering multiple myeloma, or multiple myeloma. Not really reassuring!
Hang in there!
I was diagnosed with MGUS in 2009 when I was 25. I was told I was low risk for progression and was monitored every 3-6 months. I was kind of freaked out by the diagnosis, but wasn't going to let it rule my life.
About a year ago, at one of my appointments, I discussed the possibility of starting a family. The research fellow I met with prior to seeing my doctor told me that if I wanted to have kids, I needed to make sure to have them "sooner than later."
Whaaat? I was 28 and absolutely horrified and devastated.
When I saw my specialist he said I should hopefully be "fine" to have kids, but there was risk of progression during pregnancy. He wanted to do some repeat tests: PET/CT, bone marrow biopsy, etc. to be "super careful" before I got pregnant. These tests unfortunately then reclassified me as smoldering myeloma, which was another blow, and my specialist was very worried about pregnancy progressing my condition.
Very long story short: They stained my plasma cells to see if they were hormonally receptor positive or responsive for estrogen and progesterone. They were negative, which was good news. My specialist consulted with some colleagues and said that, anecdotally, there have been cases when smoldering myeloma has not been accelerated by the advent of pregnancy, although in other cases this has been seen. I think there are only about 20 case studies / reports of women with MGUS / multiple myeloma and pregnancy. No one can really tell you definitively that you are going to be completely fine, or that you would probably progress, as there is no research to back up either. Basically my husband and I were told we have to weigh the "risk vs. benefits" as far as having children.
I totally understand how you feel being young for this and feeling to some degree like an "anomaly". I've seen a high risk OB and a fertility specialist and neither have had a patient with MGUS, smoldering multiple myeloma, or multiple myeloma. Not really reassuring!
Hang in there!
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: Feel scared and alone
Dear elizabeth104 and LYS2012.
I want to thank you for addressing the pregnancy issue. I felt so confused and overwhelmed about it. Your advice and experience has helped calm me down a bit.
Thank you all for taking the time to respond to me.
I want to thank you for addressing the pregnancy issue. I felt so confused and overwhelmed about it. Your advice and experience has helped calm me down a bit.
Thank you all for taking the time to respond to me.
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cjd - Who do you know with myeloma?: Me
- When were you/they diagnosed?: August 2012
- Age at diagnosis: 35
Re: Feel scared and alone
Hi there
I replied to your other thread too because there seems to be a mix up of g/L with g/dL, and some replies are encouraging you to push for further tests, or that your numbers are high, based on that mix up. Just in case new people are reading this older thread (as I was), it seems important to note that your lab results are all given in g/l, which is often the case in the UK. So 3 g/l is the same as 0.3g/dl, as would usually be reported from a U.S. lab.
I agree with the general view that MGUS at any level seems to, in many people, spark off auto-immune responses. These symptoms can be quite severe and certainly worrying. Discussing them with your haematologist and neurologist is important.
I hope all is going well, as it's some some years since these posts.
I replied to your other thread too because there seems to be a mix up of g/L with g/dL, and some replies are encouraging you to push for further tests, or that your numbers are high, based on that mix up. Just in case new people are reading this older thread (as I was), it seems important to note that your lab results are all given in g/l, which is often the case in the UK. So 3 g/l is the same as 0.3g/dl, as would usually be reported from a U.S. lab.
I agree with the general view that MGUS at any level seems to, in many people, spark off auto-immune responses. These symptoms can be quite severe and certainly worrying. Discussing them with your haematologist and neurologist is important.
I hope all is going well, as it's some some years since these posts.
10 posts
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