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MGUS: What It's Like to Live With a Time Bomb

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My Diagnosis Came From a Routine Blood Test

I have MGUS—monoclonal gammopathy of unknown significance. Never heard of it? Neither had I, until it was discovered on a routine blood test. When I got the lab reports from my doctor’s office to forward to Social Security for an entirely different condition, the numbers were highlighted in yellow, and there was a note at the bottom of the page that read, “Refer to oncologist/hematologist.”

I was alarmed. I called the doctor but the staff refused to tell me anything, and I couldn’t get in to see the physician for over a week. I did what most people do—I got online and researched, learning everything I could about MGUS.

I found out that white blood cells called plasma cells make proteins called immunoglobulins that function as antibodies. They fight invading bacteria and viruses. When one of these proteins gets “out of whack” and starts cloning itself, it’s called monoclonal gammopathy. Raised levels of these proteins are seen in patients with multiple myeloma and lymphoma. The particular protein they found in my blood is related to multiple myeloma.

In July of 2000, my aunt was diagnosed with multiple myeloma. We had always been extremely close; in fact, she was like my second mother. She lived just down the street from us, and when I was a kid, I stayed with her while my mom worked.

My Aunt Tinkie went to Atlanta to receive her cancer treatment. Her daughter lived there and was a health care professional, so my aunt was able to see the best myeloma doctors right away. Even so, she lasted less than a year. With this in mind, you can probably understand why I was pretty much “freaking out.”

Finally, I Saw the Doctor

I was able to see the oncologist-hematologist about ten days after I learned about my MGUS. He was very patient and informative. He said that 1% of the population over the age of 50 has the condition. At the time, I was 49. I also learned that my MGUS might never develop into multiple myeloma. I have about a 2% chance a year of the MGUS progressing into cancer. So if I live until I’m 76, I’ll have a 50-50 chance—I’m 51 now. I guess the frustrating part is that nothing can be done about the MGUS until or unless it develops into multiple myeloma. They’re just “watching it.”

Blood Tests Every Six Months

I try hard not to even think about the MGUS, and I do a pretty good job of that except for when it’s time for the tests. Then I’m a basket case. My blood pressure is usually about 130 over 70, but when I go in to see the oncologist for my test results, it always shoots up. It has been as high as 180/110. I told the nurse I didn’t have to worry about multiple myeloma—I’d die from a stroke first. Amazingly, as soon as I’ve received good reports, my numbers return to normal. Just goes to show you how detrimental stress can be!

I have to have blood tests every six months, and a 24-hour urine test once a year. Sometimes I feel as if I have a ticking time bomb inside that’s just waiting to explode.

I just returned home from my six-month blood study, and the MGUS level was up. If it continues to rise, my doctor will perform a bone marrow biopsy. I’ve already had my cry, and now I feel somewhat better. All I can do is pray. I’m not going to let this dominate my life.

Some experts say that MGUS can be caused by lupus, inflammation, or even severe arthritis. Other experts disagree, however. I choose to believe the first group. I have severe arthritis, so maybe that’s why I have the MGUS. Either way, there’s nothing I can do about it, so worrying will only make me feel worse.

Words of Advice

If you’ve been diagnosed with MGUS, try not to let it rule your life. I realize that’s easier to say than do. Even if the worst happens, and your MGUS develops into multiple myeloma, MM isn’t the quick death sentence it was just a few years ago. With new treatments and technologies, multiple myeloma victims are living longer and better quality lives. My doctor has several MM patients who have been diagnosed for six years, and my daughter, a nurse, sees a patient who’s had myeloma for ten years.

If you have MGUS, I know the range of emotions you’re going through or have gone through. You’re not alone. I suggest visiting these two very helpful websites:

You’ll find all kinds of information there about the latest treatment for the disease, along with a support group and other invaluable resources.

Updates

On my last visit to the hematologist/oncologist, my MGUS numbers shot up. My physician was going to schedule a bone marrow biopsy but decided to do some more intense blood tests before ordering the procedure. Since those blood tests were good, I didn't have to have the bone marrow biopsy.

I did, however, have to have a complete skeletal survey. This was just a series of X-rays to look at my bones for any lesions or "holes." Fortunately, none were found. Since my MGUS numbers have been rising, I now have to see my specialist every three months instead of every six months. I really hate having MGUS.

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I had a bone marrow biopsy/marrow aspiration in April 2011. They found 5-10% plasma cells. My oncologist said the number would have to be 10% for a diagnosis of MM. I was pretty upset, but he said my plasma cell numbers might never increase. Keep the prayers and good thoughts coming! I sincerely appreciate all of your comments!

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Questions & Answers

Question: I have been diagnosed with MGUS and found lytic lesions on the spine, shoulder, and near the elbow. After a pet scan then, it was negative for Multiple myelomas. Should I be concerned?

Answer: I had a pet scan a couple of years ago for a spot on my lung. I was told that a pet scan didn't show MM. How is your blood work? Talk to your oncologist about your scan results. Perhaps something else caused the lesions.

Comments

gillian Fontaine on November 16, 2018:

Hello Thanks I read your article with great interest , I discovered that I suffer from MGUS and found out very much like you from a routine blood test, obviously I was alarmed at first, especially as associated with the big C

After investigations I have only a 5 percent chance of the condition progressing , I'm almost 65 years old now

I'm not worrying about it , I have actually stopped going for check- ups now

You can live your life worrying and eventually we all pass on eventually

So I'm enjoying life for now and not worrying about tomorrow

I just dont want to know

Best wishes

Gillian

Boston_PWL on September 08, 2017:

Having MGUS is the best thing that can happen to you. Its a blessing we're all even getting tested for it in the first place. Outside of knowing about MGUS, the only thing to look forward to would be showing up at your GP complaining of back pain and finding out you have Stage 3 MM.

I think its Iceland or another country that just made the blood test mandatory. Its that important. Also there is brand new study just launched at Dana Farber where they are screening "high risk" MGUS for early treatment with the same cocktail they use to blast out full bore Myeloma.

In 10 years MM will be looked at more like a chronic disease and nothing more. The labs have already isolated synthetic versions of bones so the testing for this disease is exploding. Also consider that MM is the best cancer out there in terms of affecting other parts of the body that it does not spread outside the bone (it can't).

I have also heard that keeping up high hydration and improving your "gut" is critical. Get lots of probiotics, lots of fermentation (Kimchee) , Turmeric, Curricium and Vitamin D. Also if you have one close by, treat yourself to cold pressed juice with beets in it anytime you get the chance.

I read a while back about 2 cases where the above PLUS a full Gluten free diet cured MGUS. But in that case the person's M-spike was so low to begin with its unclear if they had MGUS to begin with.

Best of luck to everyone! Join the Facebook group as well.

Jillyhh on August 12, 2017:

Hi

This is a long way down the line. How are you ??

Tony Coe on July 29, 2017:

Hi

I have just seen this site and want to thank you all, as I have found it to be very informative and interesting to find out about other peoples journey with this condition

I was diagnosed with MGUS after a routine blood test 3yrs ago ago aged 57

Thankfully to date it has not changed but I am suffering huge amounts of fatigue, I thought this might be due to having a low thyroid, but after reading others articles I suspect the MGUS may have something to do with it def something I will bring up with the Dr's at my next appt next month

I noticed a couple of people talking about life assurance and saying as MGUS is not a cancer they should be able to get cancer cover (critical illness cover)

I am a Financial Adviser and I can tell you the life companies will refuse to cover you for both Life only and/or Critical illness cover

Also in answer to the question someone raised,you do have to disclose the MGUS to the life companies or else this would be considered as a non-disclosure and the life companies would/could refuse any death claim and/or critical illness claim, if the MGUS turns into any form of cancer in the future

Please also note if you already have Critical Illness cover, you can not claim under the policy for MGUS, but please, please keep the plan in force as you would be able to claim if the MGUS does turn into MM in the future

Hope some of you find this useful, but all of you keep your chins up and I wish you well

Tony

susan phillips on July 03, 2017:

IN fact I also don't want to add my full name or any of the comments - just wanted to communicate with you. Sorry - please don't post, not thinking straight tonight

susan phillips on July 03, 2017:

Sorry I accidentally posted last without editing and meant to say thanks for sharing your article. It helps to know you are not alone. Also, please could you delete the reference to where I live from the last post as I meant to take that out! Thanks.

susan phillips on July 03, 2017:

Hi everyone. I'm having a tough time tonight and don't have anyone to share it with. I thought I had been through it all with Conn's syndrome and taking spironolactone for years. When I finally got treatment and had an adrenalectomy I thought I could put that behind me. But no, in the meantime I had developed fibromyalgia or so the Drs diagnosed. Last year I was diagnosed with the blood disorder MGUS, had a blood test two weeks ago as I have been feeling very unwell (tired, back pain, dizzy, tingling/electric shock feeling etc). Anyway, I have a hospital appointment on Wednesday. This seemed a safe place to share because I have a daughter/dependants etc and I don't like to scare them with how I feel. Anyway, I am Liverpool based and keep wondering why I have had so many unrelated things wrong with me. Just a bit sad and scared. Thanks for reading if you made it this far! x

Sylvia L. on June 30, 2017:

Just want to add one more piece of info from my doctor which no one mentioned below and I find very interesting.

Apparently, there are now quite a few cases of MGUS but it does not necessarily turn into MM. Many can live with this condition on a stable level.

However, there has never been a case of MM without first having had MGUS.

Sylvia L. on June 30, 2017:

Maureen - read your report.

1) Re the bone marrow biopsy - it's the only way to detect early if you have MM. In other words, if the bad protein showing up in your blood is in fact cancerous.

2) Re night sweats - don't know about any connection to MM or MGUS but I did have severe night sweats when I had, unbeknown to me, a blood infection. I was totally soaked, had to change my nightwear and sheets etc. during the night. It is something serious to that degree. Better have it checked out right away.

Good luck!

Sylvia L. on June 30, 2017:

Thank you Holle for your information. I hope you continue to hold your own.

My Dad passed away in 1995 from MM whereupon I met with his doctor and was told that MM is possibly hereditary and that I need to do a special blood test yearly called electroforesis.

My blood test became inconclusive in 2016 and by 2017 it showed .04% of the bad protein. I am now at the six months blood test stage. Bone xray and 24 hrs. urine test did not show concerning results sofar.

My father, once diagnosed, decided not to do any kind of treatment when he was told life expectancy to be not more than 10 years. My oncologist is telling me that once diagnosed with MM he has not seen anyone survive more than 2 1/1 yrs. I am thinking my Dad's doctor took the MGUS time period into account when quoting the 10 year survival possibility.

My father was very courageous I feel. He had 9 years of quality of life. He bought himself a sailboat and took it to the Isle of Majorca where he sailed and played chess with the local top chess player. He only went back home in the winter for a few months.

The last year of his life he became very tired. He never complaint of pains. The last time I saw him, he could barely walk due to his weakness.

If my MGUS turns into MM there will be big decisions I'll have to make. Sounds like all of the treatments have not shown to extend life with MM according to my doctor. I will have to decide between quality of life or treatments I guess.

I am now almost 70 years old. At this stage in life, it is hard to make plans for the future because I don't know how long I will live. I suppose, being diagnosed with MM at least I will have an idea how quickly I will have to move, getting things in order.

I wish you all the best in your future. Stay strong!

Anna eisenhauer on June 23, 2017:

Are you IGA.

Angie on June 14, 2017:

Hi thanks for the info and just to know there are others out there also suffering the dreaded time bomb I was told I had mgus after having tests for autoimmune disorders I was only 34 at the time and was told this very rare in my age group I pRay that your para protein stays stable love and light Angie

Susan on May 18, 2017:

Your story sounds very much like mine, except I am just starting out. It has been just 6 months since I heard they were going to schedule me with an oncologist/hemotologist. I've seen my most recent blood test results, but am not sure which is the MGUS number. I hope your MGUS never develops further.

Ramzani on May 16, 2017:

In 2010 I was diagnose with MGUS after bone marrow biopsy was follow ups up for was once a month for 6 month then it was follow ups every three months and six monts then it was every year which was stable, and last year my my CD138 was positive after bone marrow biopsy for the second time and was really worried and was very emotional. Now I am refered to the myeloma clinic after one visit I developed Penumonia was hospitalized and was on intravinus antibiotics for 5 days after oral medication I was sent home. Resteded for nearly six weeks and did a blood test now I have developed a autoimmune condition + smoldering multiple myeloma I am really worried whats going to be next. I am refered to a Rhumotologist No treatment yet seeing the heamatologist in 4 weeks. I have faith in the Lord our God praying for a recovery.

NEUSA APPLER on December 10, 2016:

My husband had MM for 6 years, died of heart Dec,2014. I was devastated, we were widows and were married for a little over 11 years. Now 5 months ago, in a check up in Brazil with my gyno they found I have MGUS, I live alone in Key West, no family in the USA, but will never go away because I had the best years of my life here. The Oncologist here will make a follow up blood & bones next Feb. any idea about diet, life style, etc. will be welcome I don't know if it is allowed but here goes an email, n_appler@yahoo.com. Wish you good luck. I am really stressed and sad, but going on with my painting.

Maria on November 19, 2016:

Hi there. I was diagnosed with MGUS 4 years ago. January 2016 my MGUS level was 7 and I decided to start a vegan diet. April 2016 my MGUS level went down to 5.7 and this month, November, it was 5.3. My consultant is astonished. He said that in all his 30 years as consultant he has never seen anything like it. I will never go back to dairy and meat. My health has improved, I have energy, and I feel 90% considering I have Sjogren's Syndrome. Try it. It's not easy to begin with, but it will change your life.

Rita on November 03, 2016:

I was diagnosed with IgG Kappa MGUS in 2009. My older brother was diagnosed with smoldering multiple myeloma about the same time. His myeloma is still smoldering and I still have MGUS. My numbers have gradually increased over the years and I will be having my second bone marrow biopsy in the next month or so. I also was very stressed about the diagnosis when received and periodically become distressed. After doing research and reviewing my lab reports, I usually calm down. I have been to several hematologist/oncologist and they have all said I have nothing to worry about. I will probably never get multiple myeloma. For some reason that is not very reassuring. I am now seeing a physician's assistance and she is pretty much watching me closely to make sure she does not miss anything. Now that is reassuring. When doctors act like what you have is nothing, it is concerning because they are not expecting you to advance to multiple myeloma and they are not watching very closely. I have been going in every six months since 2009 and have changed doctors 5 times because of their attitudes. My grandmother died from leukemia so I am acutely aware of the affects of a blood cancer. No one can predict what is in your future. MGUS is not cancer and should not affect getting cancer insurance. I'm not too worried about my upcoming bone marrow test. I have had it before and if they give you something to take the edge off, it is not painful. I am not too worried about the results. I have been waiting to get multiple myeloma for 7 years now. I think if I am ever diagnosed with it, I will be ready. That is all you can do. Do your research yourself. There is so much the doctors will never tell you. You have to be pro-active in you healthcare.

Sherry on November 01, 2016:

I was just diagnosed IgA MGUS two weeks ago and I feel totally lost, I don't understand any of this at all. I'm to have blood work every 6 months unless it increases. There's no bones lesions. He also told me about the 1% of people over 50 has this and for me not to worry about it. Ha ha! I don't understand my numbers at all or what to even look at or for. Help!

Marc on October 25, 2016:

During the past 6 months i have been seen by perhaps 8-10 specialists, from neurology to nephrology, oncology to hematology.

Seems my white blood cells were producing strands of proteins, that were effectively attacking my own body.

In researching my medical records (military) it seems I have had MGUS for at least 8-9 years. I the past few years, I have lost over 100 pounds, lost the ability to control my bladder in any real way, developed severe peripheral neuropathy and now unable to walk, hold myself upright, dress my self, bathe myself.

My oncologist and my neurologist are now running 24 hour urines and blood tests every month, looking for MM (Multiple Myeloma).

I suspect its far past time for San Antonio to have a support group for MGUS patients/MM patients. Between SAMMC and UNiversity hospital, I now know what is happening, however feeling all alone makes it all the worse. Being able to meet and know people who have the disease, and who live with it sure beats reading clinical studies about probable outcomes.

Bryn on October 07, 2016:

Hi, thanks for such an informative thread, people's positive attitudes really are of benefit to others. I was diagnosed with MGus about 4 months ago but when the haemotologist looked back at past blood test results she saw that I had it at least 3 years ago. I know it may never happen but I am 37 and I was told approximately the percentage chance of it developing further rises each year roughly the same as your plasma levels (2.3% for me). Does this mean around 20years from now the odds are against me? Also does anyone know how it affects life insurance as technically there's no cancer yet, does MGus need to be declared?

Thanks all and best wishes

Canuck1955 on August 21, 2016:

I have sarcoidosis, and ongoing anemia and renal dysfunction caused my family doctor to blood work,

which led to a MGUS diagnosis three years ago. I had 5% plasma cells,and was told to follow- up every 6 months with my doctor, by a hematologist. When the numbers started trending up some, and freaked me out, I asked to be referred to a MM specialist at a cancer centre. Going there also freaked me out! I had a BMB, but no x rays and tons of blood tests. I was stable until January of this year, when my light chain ratio and Kappa light chains jumped right up to a possible SMM level. I had another BMB, and the plasma cells remained at 5% ( thankfully), making me 'still" Mgus, and off I went to lead my life. Six months later, the M protein went from 0.1 to 0.2, and the light chain ratio went to 8.62. The MM specialist decided to repeat the test 6 weeks later. If the ratio went up further, another BMB, but they went down just a little to 7.42. Now, I am having a renal biopsy this Friday to see if there are any Myeloma cells there,and I see my specialist again in early September. My guess is that I will now be monitored more carefully and more often, depending on the biopsy results etc. I pray I am still MGUS. The best thing is to get assessed by a MM specialist, not just a local hem/onc, who deal with many cancers. The next, is to join a good support network such as MGUS EXCHANGE on Facebook. Wonderful folk there with lots of sound advice. Finally, keep busy, keep active, treasure every day and plan to reach old age. I am 61, and my goal is to live long enough to see my kids into middle age and grey hair!! Best to you all to stay MGUS always. If we should progress, know that there are many new treatments available these days for Myeloma, and many are living ten years and more with what becomes a chronic disease. it certainly does not mean your life is over, and, hopefully, they are moving closer to a cure .

Patty W on August 15, 2016:

I was originally told I had MM which freaked me out! The doctor had done a bone marrow biopsy on me and said I had mutant genes. She said in order to find out at what stage my myeloma was, I needed an MRI. I asked her to give me the best and worst case scenario. She said WITH chemo, 6 months to 5 years! If my husband hadn't been there, I would have thought I heRd wrong. She said depending on how many bone lesions I have would be the determining factor as to whether I was stage 1, 2 , or 3. She said my X-ray didn't show lesions so I wasn't a stage 3. She also said due to my mutant genes, I didn't have MGUS. So that left me with stages 1 or 2. But since MM isn't curable, I decided I wouldn't do chemo. So then I'm presuming I have a year or two to live. Finally I got my MRI results. No lesions show there either. Now my doctor says I DO have MGUS and no therapy is needed! I went through more than 2 weeks thinking I was going to die soon! Now she says people often live with MGUS and it never becomes MM!

The only good thing that came from all of this is I realized my soul and spirit are ready to die. The terror of what would happen before I would die is what makes me upset!

Ellen K. on July 10, 2016:

I was diagnosed with MGUS around 6 months ago. Like most of the other contributors, I too discovered that I had this condition as an incidental finding during a routine blood test.

In fact, I almost went into shock when my doctor booked me aa appointment with a hematologist and I walked into the Cancer Clinic--I never had a clue that oncology and hematology were virtually synonymous. I immediately called my husband and made him leave work and come to the hospital. My son dod end up coming to my next appointment but I think this is too close to home for even a future doctor to deal with.

The hematologist did a complete blood test, a skeletal scan an MRI and a 24 hour urine test immediately--no lesions, and that ominous 1% a year chance of it becoming Myeloma. I am still unclear as to to whether that refers to 1% chance every year for the rest of my life or !% accumulated per annum overtime??

I am a 54 year old woman who runs a business, and I consider myself to be intelligent and fairly competent in getting almost anything the first time someone explains it to me. This hematologist that I met with was such a poor communicator and spent all of 5 minutes explaining this condition to me. And although my son is in medical school and my family doctor is a close family friend, I understand very little about this condition and if or when it may lead to something more serious.

My husband is adamant that I stop eating all meat and dairy--which he personally avoids, and I don;t disagree with him--at least that gives me something to do when there is nothing to do!

In the meantime, I am looking for another doctor who I can relate to in a more effective way and trying to keep positive in spite of what has felt like a time bomb to me from the first moment I heard about it.

Also, why has Habee left this chat?

Linda Fletcher on July 07, 2016:

I too have MGUS, for over a yr now,I was freaked out too but learn that it could be worse. I take Turmeric, green tea , and curimium all this is auppose to help keep you in MGUS state and not advance so far so good my test havent been as bad as first blood wise I mean.I do have Bence Jones of my kidneys but nothing can be done for that but watch also.

I am 67 hoping to at least live imtil 77 or longer, God willing.I too freak out until I get my blood test back next one i OCT. I did get a bone marrow bioposy no cancer, MRI shows one benign leision which goes along with this. Bone Marrow sedation if you get one, I was just feeling high but was awake only felt preasure not too much pain, so ask for a setative, valium ambien is what they usually give calms you.

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Hiya on July 06, 2016:

Thank you for writing this article. I am 43 and found out through a random blood test that I have an m protein and apparently mgus. I am tested every six months and told not to worry. That's about it. I was scared to death to have to walk into a cancer center for the first time. At each apt I still get scared and think about death. In between I breath a sigh of relief and try to forget until the next apt. I will say I'm frustrated that I can't find info about food or over the counter meds to avoid and foods that might help. Maybe there aren't any? You'd think by now there would be some info. I was afraid to eat red meat now I'm afraid to take aspirin. Please let me know if you've heard of any dos or dont's. Thanks again for sharing, good read. Not something you can talk to many people about if you are concerned about worrying them.

Colm on May 01, 2016:

A routine blood test (showing MGUS) meant an immediate bone marrow aspiration/biopsy & CT scan. Am waiting for the results. I assume they suspect something bad because the biopsy was requested so soon. We'll see. The point I want to make is how sad some of these stories are; where partners/husbands don't seem to care about it! Thankfully I'm in the opposite position where I'm trying to play down the potential hazards because my family are so concerned. Darlene, my suggestion would to leave him...and start looking after yourself.