Hi,
I was diagnosed with MGUS (in 2008 at the age of 55). I am IgG lambda, and my M-spike has fluctuated between 1.47 at diagnosis and 1.71 currently. It has never been lower than 0.9. Other tests (including skeletal survey (no lesions) and BMB at 6% plasma cells) are stable. The IgG level has climbed, however, and is at 2900, having started much lower. I am wondering if this alone is cause for panic, and whether progression is inevitable with these numbers.
In the past few years, some events might have helped to trigger the upward trend, such as a shingles vaccine (wish I hadn't had it), and a traumatic head injury in 2011 from a bike accident, and surgery afterwards.
Other than that, I try to live a very healthy lifestyle, including exercise, good eating; however, the stress of having this condition is unhealthy in itself!
I have 2 good doctors, one at Duke, and now a specialist in Charlotte, and am checked every three months. I know that no one has a crystal ball, and I try not to dwell on it, but I feel as if I am on the edge of a cliff! I'm sure that many people with MGUS feel the exact same way.
A question regarding medications. I have been put on Estrace estrogen cream, 0.1%, 2x a week, since July. Although I casually asked the doctor, and he didn't seem overly concerned, I have read that with those with multiple myeloma, hormones can negatively affect the progression of the disease. Although I don't have multiple myeloma at this point, I don't want to do ANYTHING to mess with my current condition, which already feels like a slippery slope. It simply isn't worth the risk.
Also, does anyone know if allergies can kick up the levels in the blood work, or push up the risk of progression?
Many questions, I know, but I would greatly appreciate feedback.
Thanks and best wishes to everyone on the forum!
Forums
4 posts
• Page 1 of 1
Re: New from North Carolina - worried about test fluctuation
Hello Cats123,
Welcome to the forum. There's a good amount of solid information in the articles and the information shared here, so you've come to a good place.
I was just diagnosed MGUS this spring. Boy, I wish I hadn't been! I know what you mean about feeling on the edge. Sometimes I'm ok with it and other times, well, I get a little obsessed trying to learn everything I can.
So, that being said, I don't think I've ever come across any studies that indicate what might precipitate a change from MGUS to SMM or multiple myeloma. In fact, I'm sure of it: they truly do not know. So in that regard, we can all rest easy and just do the best we can to maintain health - diet, exercise, prayer/meditation. All these things make any new challenges in our life more manageable.
I also remember one of the physicians commenting on this forum who said they don't worry about fluctuations unless there's a sustained big change - wish I could remember the percentage they quoted. It was something like a change from 1.4 to 1.9 and then it would have to stay that way or get higher. Additionally, fluctuations are actually quite common among MGUSers. It sounds like your physician keeps very close watch over you, so I'm sure any change would be noticeable immediately.
I wish you the best and I hope others will chime in to this conversation as well.
Welcome to the forum. There's a good amount of solid information in the articles and the information shared here, so you've come to a good place.
I was just diagnosed MGUS this spring. Boy, I wish I hadn't been! I know what you mean about feeling on the edge. Sometimes I'm ok with it and other times, well, I get a little obsessed trying to learn everything I can.
So, that being said, I don't think I've ever come across any studies that indicate what might precipitate a change from MGUS to SMM or multiple myeloma. In fact, I'm sure of it: they truly do not know. So in that regard, we can all rest easy and just do the best we can to maintain health - diet, exercise, prayer/meditation. All these things make any new challenges in our life more manageable.
I also remember one of the physicians commenting on this forum who said they don't worry about fluctuations unless there's a sustained big change - wish I could remember the percentage they quoted. It was something like a change from 1.4 to 1.9 and then it would have to stay that way or get higher. Additionally, fluctuations are actually quite common among MGUSers. It sounds like your physician keeps very close watch over you, so I'm sure any change would be noticeable immediately.
I wish you the best and I hope others will chime in to this conversation as well.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: New from North Carolina - worried about test fluctuation
Hey Cats,
Toni is right.
Fluctuations on the order of what you mention here are pretty typical for MGUS and nothing you have listed here really jumps out at me for a reason to be concerned.
I find that it is really helpful to graph your key lab results over time to really understand if something out of the ordinary is occurring. Also (as Toni mentioned), when one becomes symptomatic, one's numbers tend to accelerate pretty quickly (although not always). This is another good reason to graph your data over time.
Some folks poo-poo the idea of graphing one's lab data, but I tend to find it to be really helpful, especially when I am chatting with my onc during my routine follow ups.
I can't answer your specific questions on risk of progression with respect to hormone cream and/or allergies, but you might find these links to be insightful wrt MGUS risk of progression
https://myelomabeacon.org/news/2010/08/16/mgus-and-smoldering-multiple-myeloma-experts-identify-risk-factors-for-disease-progression-and-establish-monitoring-guidelines-part-1-mgus/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3316455/
Toni is right.
Fluctuations on the order of what you mention here are pretty typical for MGUS and nothing you have listed here really jumps out at me for a reason to be concerned.
I find that it is really helpful to graph your key lab results over time to really understand if something out of the ordinary is occurring. Also (as Toni mentioned), when one becomes symptomatic, one's numbers tend to accelerate pretty quickly (although not always). This is another good reason to graph your data over time.
Some folks poo-poo the idea of graphing one's lab data, but I tend to find it to be really helpful, especially when I am chatting with my onc during my routine follow ups.
I can't answer your specific questions on risk of progression with respect to hormone cream and/or allergies, but you might find these links to be insightful wrt MGUS risk of progression
https://myelomabeacon.org/news/2010/08/16/mgus-and-smoldering-multiple-myeloma-experts-identify-risk-factors-for-disease-progression-and-establish-monitoring-guidelines-part-1-mgus/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3316455/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New from North Carolina - worried about test fluctuation
Watching and waiting is not easy, I am sure.
MGUS (or monoclonal gammopathy of undetermined significance) is defined by having less that 3 g/dL (30 g/L) of serum M-spike (SPEP) and <10% bone marrow plasma cells and, obviously, no CRAB criteria. MGUS is a pre-malignant condition that has the potential to become active, progressing to multiple myeloma (multiple myeloma). So progression to active disease entails not simply an increase paraprotein level, but signs of active disease.
In this setting, the overall rates of progression are ~1% per year. If you parse MGUS patients into Low Risk, Low-Intermediate Risk, High-Intermediate Risk or High Risk of progression groups based on the risk factors, which are
1. Abnormal sFLC [serum free light chain] ratio
2. M-spike >1.5 g/dL (15 g/L), and
3. Non-IgG MGUS type
this equates to 20 year progression rates of 5, 21, 37 and 58% (0, 1,2 & 3 risk factors, respectively) (Rajkumar, Blood 2005).
For the entire study (1100+ MGUS patients), the overall 20-year progression rate was 20%. Of note, this means that 80% did NOT progress.
In your case, the M-spike has been relatively stable. These values will bounce up and down. Remember that the M-spike (serum- or urine-determined from protein electorphoresis, SPEP and UPEP, respectively) is a measure of abnormal protein (made by the abnormal plasma cells). Remember that the IgG contains both normal IgG as well as abnormal (M-spike) IgG in your case. The contribution of normal IgG is more amenable to differences based on infections and other processes.
I would try to be as patient as possible and continue to follow your labs over time. There will be some ebbs and flows to these labs values. The trend over time will tell you what is going on. Hopefully, for a long time in your case. You are doing great.
MGUS (or monoclonal gammopathy of undetermined significance) is defined by having less that 3 g/dL (30 g/L) of serum M-spike (SPEP) and <10% bone marrow plasma cells and, obviously, no CRAB criteria. MGUS is a pre-malignant condition that has the potential to become active, progressing to multiple myeloma (multiple myeloma). So progression to active disease entails not simply an increase paraprotein level, but signs of active disease.
In this setting, the overall rates of progression are ~1% per year. If you parse MGUS patients into Low Risk, Low-Intermediate Risk, High-Intermediate Risk or High Risk of progression groups based on the risk factors, which are
1. Abnormal sFLC [serum free light chain] ratio
2. M-spike >1.5 g/dL (15 g/L), and
3. Non-IgG MGUS type
this equates to 20 year progression rates of 5, 21, 37 and 58% (0, 1,2 & 3 risk factors, respectively) (Rajkumar, Blood 2005).
For the entire study (1100+ MGUS patients), the overall 20-year progression rate was 20%. Of note, this means that 80% did NOT progress.
In your case, the M-spike has been relatively stable. These values will bounce up and down. Remember that the M-spike (serum- or urine-determined from protein electorphoresis, SPEP and UPEP, respectively) is a measure of abnormal protein (made by the abnormal plasma cells). Remember that the IgG contains both normal IgG as well as abnormal (M-spike) IgG in your case. The contribution of normal IgG is more amenable to differences based on infections and other processes.
I would try to be as patient as possible and continue to follow your labs over time. There will be some ebbs and flows to these labs values. The trend over time will tell you what is going on. Hopefully, for a long time in your case. You are doing great.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
4 posts
• Page 1 of 1