I am new here and was just diagnosed today with MGUS. I am amazed at how crazy the last few months / years have been. I guess I will include this label on my ever growing list of diagnoses I have had to deal with over the last 2 years.
In 2013, I had to deal with thyroid cancer and then a diagnosis of pulmonary hypertension and cardiac diastolic dysfunction. In 2014, we added a few more, including chest angina pains, lung obstruction, and abnormal gas exchange diffusion pattern in my lungs. Ended the year with a sepsis heart failure and bilateral pneumonia hospitalization. I keep thinking in 2012 I was perfectly healthy with just a little arthritis. Crazy huh?
So, this year I started off with a simple work shoulder injury. To think I went from having an MRI because of an injured shoulder and ended up in an oncologist office. Crazy ... but of course I am no stranger to cancer. I beat thyroid cancer 2 years ago ... well hope I did. That level also recently came back elevated in my follow up blood work. So more follow up tests will happen in June to rule that in or out again. Wow. June is sure looking to be busy. Shoulder surgery, thyroid cancer re-testing, pulmonary lung function tests, and another follow up with the rheumatologist because I had recent blood work show an elevated positive ANA test result.
Despite it all. I am trying to focus on the positive. I do have many encouraging positive results. Typical CBC and no renal issues. I also do not have any bone masses; thankfully, the bone X-rays came back fine. I do, however, have elevated IgA and light chain Ig kappa with an elevated ratio. BUT ... no M spike, thankfully. So no cancer. I was very happy to hear that.
So now what is next? The hematologist / oncologist also told me today that I have 1/3 of a chance for it to develop into multiple myeloma. He said that, for now, they will just monitor me to ensure that the plasma cell abnormalities do not progress into multiple myeloma.
I guess for right now, I am just trying to learn as much as I can. I find that, if I can understand things, I can deal better. I know it might should a bit strange, but I find comfort with knowledge.
Thanks for listening to the start of my new journey. I am hoping for a long and boring one.
Positive thoughts for healthier days!
Forums
10 posts
• Page 1 of 1
Re: Just diagnosed with MGUS – now what?
Patti - I sounds like you've been through the ringer with your health!
With regard to your MGUS diagnosis, though, I do not understand how you are diagnosed MGUS if you do not have an M-spike? Did you have a 24-hour urine test?
With regard to your MGUS diagnosis, though, I do not understand how you are diagnosed MGUS if you do not have an M-spike? Did you have a 24-hour urine test?
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Just diagnosed with MGUS – now what?
Hi Patti,
It's good that you got your situation clarified in regard to whether or not you have any sort of monoclonal gammopathy. I'm sure you know this already, but many people have MGUS without even knowing it, and most of those diagnosed with it never progress to myeloma.
It sounds like you have the variant of MGUS known as "light-chain MGUS" (or light-chain only MGUS). There is a thread here in the forum with information about it, including details of what factors affect a patient's risk of progressing from MGUS to smoldering or symptomatic multiple myeloma:
"Light chain MGUS - risk of progression" (started Jan 15, 2015)
If you haven't done it, it's worth going through and checking all the different threads in the MGUS part of the forum. You don't have to do it all at once, but you'll learn a lot by reviewing them slowly over time. Before you'll know it, you'll be one of those people helping others here in the forum!
Take care.
It's good that you got your situation clarified in regard to whether or not you have any sort of monoclonal gammopathy. I'm sure you know this already, but many people have MGUS without even knowing it, and most of those diagnosed with it never progress to myeloma.
It sounds like you have the variant of MGUS known as "light-chain MGUS" (or light-chain only MGUS). There is a thread here in the forum with information about it, including details of what factors affect a patient's risk of progressing from MGUS to smoldering or symptomatic multiple myeloma:
"Light chain MGUS - risk of progression" (started Jan 15, 2015)
If you haven't done it, it's worth going through and checking all the different threads in the MGUS part of the forum. You don't have to do it all at once, but you'll learn a lot by reviewing them slowly over time. Before you'll know it, you'll be one of those people helping others here in the forum!
Take care.
Re: Just diagnosed with MGUS – now what?
Tony, thank you, it has been a fun few years (not really), but I am guessing you picked up on my sarcasm. Sorry, sometimes I have to just laugh at it all. But to answer your question – I am not sure.I am still processing it all. Perhaps it is the variant of MGUS known as "light-chain MGUS" (or light-chain only MGUS) that Cheryl mentioned above. I will research that next.
But either way, time will tell. I also have an upcoming doctors appointment with my new rheumatologist. Lucky him, because I am sure by then I will have a ton of questions. Also, by then I will have the doctor's note that will contain the actual name to the diagnosis. What I know so far is what he told me when he briefly explained it to me yesterday, calling it MGUS.
I did ask some questions because I do have a lot of health issues, like an ANA blood test that recently came back positive. The doctor yesterday stated that it generally indicates a rheumatological condition since the tests detects antinuclear antibodies (ANA) in your blood. This could mean several things, including systemic lupus erythematosus, rheumatoid arthritis, or scleroderma. which might explain a few things.
Basically, they have been treating my ill-defined inflammation arthritis for a year with Plaquenil (hydroxychloroquine). My SED rates and C reactive protein numbers have dropped, which has been reassuring that the medication has been working. Now I am not so sure. But I will wait and see what the new rheumatologist has to say.
I also asked if my diastolic dysfunction heart component are connected. He said that there is another condition called amyloidosis that can develop with patients who have multiple myeloma. He said that my blood work does not support that yet. come to think of it. He used that word a lot yesterday. He also stated I'm too young to have pulmonary hypertension and diastolic dysfunction, which suddenly surfaced like I said in 2013. Which has declined since then ... not that my doctors can make sense of that. Or they have not been able to as of yet.
Perhaps with each test they will get more answers that may explain my symptoms and make sense of it all.
But either way, time will tell. I also have an upcoming doctors appointment with my new rheumatologist. Lucky him, because I am sure by then I will have a ton of questions. Also, by then I will have the doctor's note that will contain the actual name to the diagnosis. What I know so far is what he told me when he briefly explained it to me yesterday, calling it MGUS.
I did ask some questions because I do have a lot of health issues, like an ANA blood test that recently came back positive. The doctor yesterday stated that it generally indicates a rheumatological condition since the tests detects antinuclear antibodies (ANA) in your blood. This could mean several things, including systemic lupus erythematosus, rheumatoid arthritis, or scleroderma. which might explain a few things.
Basically, they have been treating my ill-defined inflammation arthritis for a year with Plaquenil (hydroxychloroquine). My SED rates and C reactive protein numbers have dropped, which has been reassuring that the medication has been working. Now I am not so sure. But I will wait and see what the new rheumatologist has to say.
I also asked if my diastolic dysfunction heart component are connected. He said that there is another condition called amyloidosis that can develop with patients who have multiple myeloma. He said that my blood work does not support that yet. come to think of it. He used that word a lot yesterday. He also stated I'm too young to have pulmonary hypertension and diastolic dysfunction, which suddenly surfaced like I said in 2013. Which has declined since then ... not that my doctors can make sense of that. Or they have not been able to as of yet.
Perhaps with each test they will get more answers that may explain my symptoms and make sense of it all.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Just diagnosed with MGUS – now what?
Thank you, Cheryl. I will certainly look that up. At this point, I am just trying to process it and make sense of it all. Thank you for the link, that will help me get started in my research.
Hope all is well. Thanks again for your help.
Hope all is well. Thanks again for your help.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Just diagnosed with MGUS – now what?
Hi Patti,
If your doctor told you that you have a 1/3 chance of MGUS progressing to active multiple myeloma, he/she was probably saying that was your risk of progression over your lifetime. The risk of progression from MGUS to active multiple myeloma is only about 1% per year (which I find to be a comforting way of looking at the risk-of-progression stats). So, he / she probably just guessed that you might have 30+ years to live and multiplied ~ 30 years by 1% to get a lifetime cumulative risk of about 1/3.
A lot of folks go through life with MGUS and never even know they have the disease ... and are never any the worse for it.
I'm like you in that I do find a lot of comfort in knowledge.
Lastly, if your hematologist isn't a true multiple myeloma specialist, I might suggest seeking out one at your leisure to have a relationship with and to review your results to date. If you let us know what city you are in, folks can make some recommendations on where to find these specialists. When you meet with the specialist, you might want to also discuss whether a bone marrow biopsy might make sense at some point in time.
Take care.
If your doctor told you that you have a 1/3 chance of MGUS progressing to active multiple myeloma, he/she was probably saying that was your risk of progression over your lifetime. The risk of progression from MGUS to active multiple myeloma is only about 1% per year (which I find to be a comforting way of looking at the risk-of-progression stats). So, he / she probably just guessed that you might have 30+ years to live and multiplied ~ 30 years by 1% to get a lifetime cumulative risk of about 1/3.
A lot of folks go through life with MGUS and never even know they have the disease ... and are never any the worse for it.
I'm like you in that I do find a lot of comfort in knowledge.
Lastly, if your hematologist isn't a true multiple myeloma specialist, I might suggest seeking out one at your leisure to have a relationship with and to review your results to date. If you let us know what city you are in, folks can make some recommendations on where to find these specialists. When you meet with the specialist, you might want to also discuss whether a bone marrow biopsy might make sense at some point in time.
Take care.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS – now what?
Thanks Multibilly, I do find comfort in knowledge and so far am dealing okay with all of this new information. Its a lot to process.
I am sure you are right about the lifetime. And he said that there are many people who never have it progress to multiple myeloma. But he added that I am young so it has more time to possibly develop.
I am not sure if he is a multiple myeloma specialist or not. When my primary sent me, I told her as long as it is not cancer related, I was okay with a local doctor, but I am not sure I will stay local. Still researching and I know that technically it is a benign condition, but I might want a second opinion. I see the specialist for my thyroid cancer at Brigham Hospital in Boston. I was going to search their web site and see what they offer for treatment and resources. Are you familiar with any doctors in Boston Massachusetts?
I have been reading and also wonder if I should have one at one point, especially given the MRI results. Perhaps when they repeat the blood work in November. But I am thinking of asking more when I see the rheumatologist in June.
Of course they will have my shoulder opened up soon, since I was just notified that I was approved by workmans comp to have the shoulder surgery my orthopedic surgeon requested. That will be also scheduled in June. Looks to be a busy June.
Thank you again. Hope all is well. Positive thoughts for healthier days.
I am sure you are right about the lifetime. And he said that there are many people who never have it progress to multiple myeloma. But he added that I am young so it has more time to possibly develop.
I am not sure if he is a multiple myeloma specialist or not. When my primary sent me, I told her as long as it is not cancer related, I was okay with a local doctor, but I am not sure I will stay local. Still researching and I know that technically it is a benign condition, but I might want a second opinion. I see the specialist for my thyroid cancer at Brigham Hospital in Boston. I was going to search their web site and see what they offer for treatment and resources. Are you familiar with any doctors in Boston Massachusetts?
I have been reading and also wonder if I should have one at one point, especially given the MRI results. Perhaps when they repeat the blood work in November. But I am thinking of asking more when I see the rheumatologist in June.
Of course they will have my shoulder opened up soon, since I was just notified that I was approved by workmans comp to have the shoulder surgery my orthopedic surgeon requested. That will be also scheduled in June. Looks to be a busy June.
Thank you again. Hope all is well. Positive thoughts for healthier days.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Just diagnosed with MGUS – now what?
Boston has a wealth of world-class multiple myeloma specialists. You have access to folks like Dr. Paul Richardson, Dr. Ken Anderson, and Dr. Irene Ghobrial at Dana-Farber, as well as Dr. Noopur Raje at Mass General.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just diagnosed with MGUS – now what?
Thank you for the names. I saw the list on the web site and was like, okay, now I need to narrow that down. My daughter also reminded me that her boyfriend worked at Dana Farber a few years before switching to the research department at Boston Children's Hospital. She will talk to him tonight. Perhaps he can narrow the list you gave me down even more.
Thank you again.
Thank you again.
-
patti1963 - Name: Patti1963
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 51
Re: Just diagnosed with MGUS – now what?
Patti,
I think it's important for you to know that amyloidosis can happen in the absence of myeloma, as its own condition - which has its own specialists and needs treatment! Have you had tests to definitively rule out amyloidosis? Usually this is a biopsy of some kind, with special stains in the pathology lab.
Amyloidosis is notorious for causing diastolic cardiac dysfunction in a person who otherwise shouldn't really have heart problems.
Boston Medical Center has a world class amyloidosis clinic.
(I developed amyloidosis in 2012)
Private message me if you want to discuss this more.
Tracy
I think it's important for you to know that amyloidosis can happen in the absence of myeloma, as its own condition - which has its own specialists and needs treatment! Have you had tests to definitively rule out amyloidosis? Usually this is a biopsy of some kind, with special stains in the pathology lab.
Amyloidosis is notorious for causing diastolic cardiac dysfunction in a person who otherwise shouldn't really have heart problems.
Boston Medical Center has a world class amyloidosis clinic.
(I developed amyloidosis in 2012)
Private message me if you want to discuss this more.
Tracy
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
10 posts
• Page 1 of 1
Return to Member Introductions / Personal Stories