MGUS for more than 30 years

August 30 2010 post. When, in early 2006, I told my best friend that I had progressed from benign MGUS to the, er, less benign condition of SMM, or smoldering myeloma, she didn’t look shocked or tell me she was sorry or burst into tears (all of which I deeply appreciated!). It’s not that she didn’t care, of course. She is just a no-nonsense, positive-thinking person. And she almost immediately remarked, “You know, I think A. has something like that, too.” “Really?,” I answered, surprised.

And so we began chatting about A., who has been her closest friend since they were in the same class in high school…Well, it turned out that my best friend was right: A. was diagnosed with MGUS when…get ready for this!…when she was in her 20s. Since she is now in her mid 50s, that means that she has had MGUS for more than half her life…

This is actually my second post about A. My first post dates to 2007, when she swam across the Strait of Messina: http://margaret.healthblogs.org/2007/08/06/swimming-across-the-strait-of-messinawith-smm-an-inspiring-story/

There is more to this story…

A few years ago, A. had breast cancer and went through a number of chemo treatments, which didn’t, however, have any negative effect on her MGUS. Her numbers remained stable. And I am happy to report that I saw her test results last spring: they were excellent. In fact, her numbers place her in the MGUS, not SMM, category.

In case you are wondering, no, she still cannot interpret her own blood test results. She relies on her haematologist for that. As I said in 2007, some people are better off not knowing too much about…things…

But wait…why am I writing about A. again today? Well, mainly because every so often I receive private messages/blog contacts from people who have been recently diagnosed with MGUS and SMM and are scared of progressing some day to active myeloma. Well, to be honest, that nagging little thought is in the back of my mind, too. And sometimes, especially when I become aware of a new ache/pain, the notion that it might be caused by myeloma manages to push its way for a nanomoment to the front part of my brain. Then Reason and Optimism take over and push that notion back where it belongs…

That back-of-mind thought is why my research and my blog are so important to me. I receive many private (and public!) thank-yous and compliments, which are all very much appreciated…but the truth is that I do all this reading and research mainly because I am fighting for my own life. I am fighting to remain stable. And (why not admit to it?) perhaps I am fighting not to be scared…

Doctors tell us that there is nothing we can do. All we can do is “wait for the other shoe to drop.” I doubt they realize how disempowering that is…and how helpless and frightened and alone it makes us feel…

But hey, I am not going to sit back and just…wait. I am going to keep on learning as much as I can about this cancer. I am going to keep updated and test (on myself!) a few, scientifically proven, non-toxic substances, obtained only from reliable sources, of course…Oh dear, I’m so sorry…I digress, as usual!

Another reason for today’s post is that I have had a few exchanges with a young woman who has recently been diagnosed with MGUS and is very VERY scared. She always gets severe panic attacks and even colic pains before going to the lab to have routine blood tests done. Oh, and sleepless nights, too. I have tried to be as reassuring as possible. But this morning I realized that, instead of reminding her of all the favourable statistics (= only a very small percentage of MGUS folks will progress to active myeloma, blablabla), perhaps the very best thing I could do for her and others would be to provide a few more details about A.

After all, A. is not a number. She is not a statistic. She is a real, living and verrry active, wonderful person. And she has become a dear friend of mine (one of my close, card-playing, laughing buddies, in fact). 

Still with MGUS.

After all these years…

25 thoughts on “MGUS for more than 30 years

  1. mary ann

    Hi Margeret,
    I have MM. Stage 3 IgG lamda. Now in remission. Did juicing and supliments. Plan on visiting italy and I will be in abruzzo. Would love to talk. I was diagnosed March 3,2010. Ended up with 7 broken ribs and 6 compressed vertebrae. I did get a bronchitis infection before being diagnosed. I asked my doc if I was mgus or smoldering and he said neither. That it is remission. I am not sure he knows so I am changing doctors and going to a mm specialist. Many people are calling me for advice and I tell them bout your blog. Mary Ann W

    Reply
  2. Julie

    “perhaps I am fighting not to be scared…”
    I understand that. and trying to be in control of SOMETHING in this disease process – it feels like trying to drive a bus with no steering wheel. I think the scariest thing was when my patient progressed past smoldering, but now it doesn’t seem so scary or like the end of the line.

    Reply
  3. Vera

    Hello Margaret,

    I have just been diagnosed with MGUS… well, actually I still have to get some more CT scans this Thursday to make sure there are no holes to be found anywhere in my bones. Now I’ve discovered your blog and just read this post on A. Thank you for that. Right now I’m still wondering what will be best for me: find out as much as I can about it or just try not to think about it too much and rely on my doctor only. I think I’ll read a little more on here though. Because I’m sure there must be something one can do to improve the odds instead of just sitting around and waiting. Thanks for your blog and all the best for you!

    Reply
  4. Paula L

    Vera,
    I was diagnosed in late July, so I understand exactly how you feel! I had the skeletal survey–no lesions, although i do have substantial osteopenia and osteoporosis. I have been prescribed bisphosphonates. I’m trying not to dwell on the possibility of progression at this time…I am being monitored every six months. It helps to have someone to talk to, and there’s a Facebook group if you’re interested. Best of luck!

    Reply
  5. Robert O.

    Hi Margaret
    What a wonderful resource you have created.

    I was diagnosed with MGUS in March and have a 3.0 g/l Gamma band with no Gamma suppression at this point.

    My very friendly Hematologist was reassuring and other than blood tests twice a year and an annual bone scan says he hopes never to see me again. I asked him about non-medical interventions and he was not forthcoming so your site is the first that offers me some direction on this approach.

    The BMB and bone scans were scary, especially as the young doc who did the BMB said she thought I had smoldering vs. full blown MM which didn’t sound so bad until I looked it up. I also had a follow up CT of my head, as there were some questionable spots on the bone scan.

    My primary doc also got nervous about my rib and back pain and sent me off for a nuclear medicine whole body scan (rather unpleasant as I was apparently radioactive for a couple of weeks afterwards and was told not to hug my kids.) They wanted to repeat it after 3 months but the oncologist agreed with me it was unnecessary. The good news is that everything turned out normal.

    I have had ongoing bouts of chronic fatigue for the last three years since a bout of pneumonia and get knocked over very easily by small viruses etc. I have young kids so this is a regular issue as I am in the school germ pool. No one has acknowledged this could all be related to the MGUS!

    I am going to check out the curcumin idea.

    I loved your piece on A and realize from my own experience that being told you may get MM eventually sounds like a death sentence at first, but I am also fortunate at least for now that my scores are so low which no one really bothered to explain to me in any detail.

    Good luck to everyone on teh site. We all deserve to live long and uneventful lives!

    Reply
  6. Fred

    I was diagnosed with MGUS and had a bone scan that proved negative. My blood and urine was tested but I refused the bone marrow test because I felt it was too invasive. Should I have the bone marrow test?
    Also my oncologist called it smoldering myloma. I still dont know the difference between MGUS and Smoldering Myloma. Can you explain or point me to where its clearly explained in the website.
    Please respond.
    Thanks in advance

    Reply
  7. Terry

    Hi Fred, you mention your blood and urine were tested…what were the results? Did you have an SPEP, 24 hour urine, FLC assay, etc? How was your CBC…calcium, creatinine, etc. These would be important considerations. The bottomline is that a BMB is the definitive test for myeloma and its precursor stages…SMM and MGUS. I have had two. They are not exactly pleasant but after both, I was able to go to work, etc. immediately thereafter. For your own peace of mind, I would consider having one done. I would also highly recommend that you go to an actual myeloma expert, not a general oncologist.

    Reply
  8. Alana

    Hi, The story of A. reminds me of my own story. I have had MGUS for 11 years now….but not the normal MGUS. I have Bence-Jones protein in my urine which is causing damage to my kidneys. But I have twice been through the rounds of tests to be sure I don’t have MM. (I have had a total of 6 biopsies, I get a skeletal survey once a year). I was dx at age 42 and had 80% kidney function. At 54, I now have about 50% kidney function. The docs keep a very close watch on me and are all amazed that I have gone this long without progressing. All I can say is that you don’t know what the future will hold….at first I really wanted to get treatment, to be able to DO something about it. The doctors told me the watching and waiting and uncertainty is the hardest thing for patients. But it turns out to have been right for me as I am still healthy. I even was in the hospital for a week last year with pancreatitis and it did not affect my MGUS. What I’ve learned through all this is yes, educate yourself, but also, get good doctors and TRUST them because if they are good they know more than you will ever know. To Fred, you really should get the BMB to see what the level of plasma cells are in your bone marrow…you cannot get any kind of proper diagnosis until you know this. Good luck everyone.

    Reply
  9. Terry

    Hi Alana, I am an avid reader and an occasional poster here. I was intrigued by your post. I am a light chain only kappa restricted smolderer. I also have Bence Jones paraproteins in my urine–about 1.5 grams per 24 hours. So far, my kidneys are functioning normally–creatinine is perfect. I was intrigued because according to the CRAB criteria, you have reached the R for the initiation of treatment. How does your doctor reconcile that? Is your % of plasma cells under 10%. Thanks. terry from NJ.

    Reply
  10. Alana

    Hi Terry, My situation was so frustrating at first because all the research I did said you can’t have renal dysfunction with MGUS. But, I’ve had two BMB and my plasma cells are under 10%. They’ve also checked for amyloidosis, and that’s negative, so they classed me as MGUS. I think I’m kind of more “in between” MGUS and smoldering, but they have never actually said that to me. However, I just moved to a different city with different docs. It’s been a while since my last biopsy, so I’m thinking they might want to do another. To people wondering about the bone marrow biopsy, it IS painful. With the second one I got the conscious sedation and that really helped.

    Reply
    1. Michelle

      Hi Alana,
      You obviously replied here a while ago. But I hope that you can read this, or will get this via email.
      I am 42 and am not sure if I have MGUS or MM. I too have an abnormal FLC ratio (0.06) and Bence Jones proteins.
      I’ve been reading about light-chain MGUS and am hoping that I have that and not MM.
      I also read about MGRS – monoclonal gammopathy of renal significance. Have you ever heard of this? (Since yours seems to be renal related).
      If you have your own blog I’d be interested in following you, so please reply here if you do.
      Michelle

      Reply
  11. Alana

    PS I should also say I have an abnormal FLC ratio and so for all these reasons put together they do say I am in the high risk group to progress.
    After 11, going on 12 years of this I’ve gotten used to it and try not to think about it too much. In the meantime I’ve done an awful lot in my life over the last 11 years!

    Reply
  12. Terry

    Hi Alana, I like your positive attitude about dealing with this situation. If you are in the US, you should certainly contact Dr. Landgren’s office at the NIH. I am in his study there of the progression of MGUS to SMM to active myeloma. He is one the the leading authorities of myeloma in the world and an amazingly compassionate doctor to boot. They will evaluate you for free and even reimburse your travel expenses. He will clearly be able to classify your level plasma cell infiltration, etc. as the NIH has the most cutting edge technology there is. Regards. Terry

    Reply
  13. Fred

    I still dont know the difference between MGUS and smoldering myloma. Can anyone explain or point to a place where I can find out?

    Reply
  14. LIly

    I was diagnosed in 2008 at age 42, IgG kappa, .56 m spike, normal freelite chain ratio. My recent BMB showed .3% plasma cells, which was such a relief. But, I have a lytic lesion in my skull, one in my femur, and one “insignificant” finding in my spine. The radiologist says it’s too tiny to be a concern. I’m concerned. My oncologist says that I don’t meet the three minor criteria for MM, and still classifies me as MGUS. I have done much reading on the internet and seem to fit the criteria for indolent myeloma. I guess it doesn’t matter what it’s called, I just want to know what my risk is for progression, given my bone involvement. My doc says that my BMB was a huge indicator that this would probably progress very slowly, if at all. He says he will put me on bisphosphonates if my bone involvement progresses. I’m confused. Any thoughts?

    Reply
  15. Terry L

    Hi Lilly, I would definitely get a second opinion from another myeloma expert for your own peace of mind. I didn’t realize one could have multiple lytic lesions and still be MGUS. I do know the literature talks about myeloma plasma cell infiltration of the bone marrow as being “patchy”, i.e., you could normal marrow in one spot and abnormal marrow in other areas. Do you have any level of immune paresis? How are your other markers–calcium, creatinine, hemoglobin, LDH, CRP, B2M, etc.? Good luck

    Reply
  16. Lily

    Dear Terry,
    I have thought about consulting with another oncologist, but these lesions have been present since my initial bone survey in 2008. I have one new one in my skull that wasn’t there at that time, but no other progression. And since 2008, by dumb luck, I have seen three different oncologists – one went on sabbatical, one left clinical practice to go back to research, so now I’m with my third doctor that I just love. They have all seen the radiologist reports and have all said it’s still MGUS. Two reports described the lesions as possible “lucencies of osteopenia” or possible lytic lesions of myeloma, but the last report I had stated “lytic lesions.” The other tests you’ve mentioned have all been normal, with the exception of my IgG, which is 1620 (range to 1600). I haven’t had an LDH test, maybe because my platelets are always elevated (I have no spleen) and apparently an elevated platelet count will falsely elevate an LDH test. So again, I’m trying not to worry but…we all know with MGUS it’s hard not to. My next set of labs is at the end of April. My m spike went from .56 to .68 last time, so of course I’m very apprehensive about what these labs might show. I’m appreciative that so many on this forum are so educated about this condition/disease and really know what it feels like to go through this. I just don’t want to overlook something that I should be concerned about now. Like you, I’ve never read anything that says MGUS is MGUS if there is any type of bone lesion. Thanks so much for your reply. Lily

    Reply
  17. Andrea

    Terry
    I am a newly diagnosed (nervous) person. Still not sure if its mgus or smm…waiting for result of BMB.
    I am interested in contacting Dr Landgren, is he open to natural therapy ie: curcumin, or does he advocate chemo? I am not comfortable with my current dr and am looking for a ‘compasionate expert’. Your assistance is greatly appreciated
    Andrea

    Reply
  18. judy

    Please help me. I have Magus since 2008. I now have breast cancer. Stage two non hormonal . Scheduled for a lumpectomy and lymph nodes removed during surgery. They are pushing chemotherapy. I don’t know how or if chemo will affect my mgus. Will it push it into full blown mm?

    Reply
  19. Debra

    Hi Judy.
    I don’t have MGUS but did have a terminal lump removed, also removal of a ganglia for complete diagnosis (M.D.Anderson). Fortunately chemo wasn’t necessary—only 1 month radiotherapy. Have you inquired about this? Wish you luck. Just to let you know that chemo isn’t always the only alternative, but your doctors know best.

    Reply
  20. Lou Sears

    Glad to have found this blog – seems there aren’t that many dedicated to just MGUS. I’ve just been told that I have MGUS. I was in the hospital with pneumonia at the end of the school year (I’m a Reading Specialist) and they found a spike in the M-Protein in my blood tests. The doctor said it was 2.8 (she said 3.5 is considered significant and is usually associated with MM). I was worried that the number was close to 3.0. Not sure when it becomes Smoldering MM according to M-Protein numbers. I’ve been referred to a hematologist and she’s having me go through more blood tests, full skeletal x-rays, and I have the bone marrow test this week. It’s all very scary and I’m trying to find out as much as I can about MGUS, SMM, and MM.

    Reply
  21. Becky

    I am just finishing testing waiting for results. I’m wondering what they’ll be. Had the BMB this week. Any people writing in this blog will certainly help. I’m not too anxious, but of course I feel like I want To know the results and figure out what is going on. The only reason I’m this far is because I’ve had itchy skin for months, with no rash. We tested for thyroid and vitamin D and allergies and on and on. Finally they found the M spike in the blood.

    Reply
  22. Kanta

    It’s good to have found this site.
    I have MGUS initially doctors prepared me for much worse, so I was relieved that I had much longer to live than first expected. I was finishing writing a PhD thesis for Oxford Uni, since I became sick, mostly tired; I stopped writing.
    But I know I will improve and get back to it. Initially I had very low energy levels, but with an improved diet and supplements such as B100, I now have more and more energy.

    Reply
  23. jodi

    Hi, I just got diagnosed last week with this. It was found in a blood test. I have been having pain in my heel for about 6 months and 1.5 yrs with plantar fasciitis in the same foot. After the PF was healed last spring from PRP injections (platelet rich plasma) …the pain in my heel remained and two toes on the same foot became numb. I had a nerve mapping done and there was to some degree a showing of nerve damage. (in both feet). although, my Dr’s found that my sugars were not high nor long enough nor my high blood pressure a problem. This is where they went looking for more. I just had a 24 hr urine test and am waiting to hear back. It is a little scary, even though my Dr’s said not to worry. :( Thanks for your site!

    Reply

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