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Smoldering Myeloma

Hello,
Was diagnosed in 2013 with MGUS which has progressed to smoldering myeloma (IgG Lambda). Am a healthcare professional and never thought “it” would ever happen to me as I was always healthy. No overt symptoms and fortunately, my genetic testing for the common genes is negative. However, I’m followed every two months with blood work and my last set of bloods didn’t look so good.

I don’t discuss with my family as I don’t want to alarm them when there is nothing “happening”. Am praying I stay smoldering and don’t progress. Fortunately, so much has changed in the treatment of people smoldering (mainly trials) and many people with myeloma are living longer. Hard to not worry from one check up to another. Am so happy to join this group to become even more informed than I am. Thank you

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Comments

  • Skattie author
    1 year ago

    Thanks everyone. Mary, I’m not sure what your oncologist is indicating but everyone that has a positive SPEP and indications of MM in the bloodwork should have a bone marrow biopsy.Specialists treat intermediate-high risk SMM to avoid progression but each case is individualized as some low risk patients depending on their genetics can undergo trials too. I have had two bone marrow biopsies and have 20% plasma cells in the marrow which is well below the 60% that would define it as full-blown myeloma. I meet only one of the criteria which puts me into the smoldering group and that is my plasma cells. My m-protein is 1.8 which is much lower than the >3 reading. I have none of the commonly found genetic abnormalities. No trisomy, deletions or other common genetics. Obviously there is some genetic abnormality but at this time, they don’t identify or treat others. My light chains are well below the level that would up me to high risk smoldering so at this point, I’m considered low-risk bordering on intermediate. My bones are free of lytic lesions. I get followed every 2 months by a specialist in my area who treats myeloma but he is not a specific myeloma specialist. However, he discusses cases with myeloma specialists and he took my case to tumor board last month that had visiting professors from GW Medical center and overseas. They discussed that I probably will progress one day but no treatment at this stage. The longer we smolder, the less likely we will progress so I remain hopeful. I know someone who has been smoldering for 16 years. I will keep a close eye on my labs and at some point, will go to Mayo or one of the other centers to see a true myeloma specialist. I DID get a curbside consult from Dr. Brian Durie the founder of the International Myeloma Foundation. I know his wife and their office is close to my son’s apartment so I stopped by and Dr. Durie, the guru, told me that I must stop worrying, I’m okay. We all know that MM is ever changing within us and complex. We need to be diligent and become informed. Here is a great link to understanding diagnostic criteria for understanding MM from the IMWG. http://medicalcriteria.com/web/multiple-myeloma/

  • mary
    1 year ago

    Hi are they treating you as smoldering ? If I didn’t have the fractures ,because I do not have all the symptoms of active but I am active myeloma my oncologist said she wouldn’t had treated me yet.but during my second opinion that oncologist said he would had been treating me at smoldering..with out the fractures if I hadn’t been fracturing it was in my bone marrow, so I’m just wondering if you have had your marrow tests done to see if there is any in your marrow.because even if I didn’t fracture I had no anemia, or kidney issues except one night and it responded after a night of iv and I have not had issues since.if they hadn’t done the marrow test they wouldn’t had known it was 90 percent in my marrow.but that second opinion oncologist said he treats smoldering myloma.so I just wanted to let you know that.so I guess having the fractures kind of saved me for lack of all symptoms and when it was said I was already in stage 3.so I hope they are doing the rest of testing for you this illness is complicated.my oncologist said my case is odd because I don’t have all symptoms I look more like smoldering but when further testing was done I am active.I just wanted to respond after reading your post because incase they are not doing a biopsie to see if any is in the marrow.if they did not keep me in the hospital when I fractured I probably would not had been tested further .

  • Skattie author
    1 year ago

    Hi Anthony and Cynthia,
    Thank you so much for your comments. I’m pretty well up on my disease and yes, I have consulted with a myeloma specialist although my local oncologist treats mostly myeloma patients and he reaches out to the Mayo guys and others if he’s unsure. He actually took my case to the tumor board meeting last week with a visiting Professor as I am a bit of an enigma at present (aren’t we all with this complex disease?). I’m waiting for June 11 when I will have repeat bloodwork done and an MRI which will really tell us where I’m heading. I really appreciate this group and Cynthia, I know you from other groups and really appreciate what both of you are doing for us. I look forward to reading more on this site and maintaining an active participation.

  • CindyC moderator
    1 year ago

    I’m sorry to hear your disease progressed from MGUS to SMM. I was dx with myeloma in 2008. A lot of progress has been made in this field. The area of SMM is being actively studied by many myeloma specialists and researchers. I assume you have had a consult with a myeloma specialist (someone who only treats myeloma), since you had genetic testing done. If not I suggest that you do so. There are many trials and registries for SMM patients. Best of luck.

  • Anthony Carrone moderator
    1 year ago

    Hi Skattie, I am sorry to hear about your diagnosis, but I’m so glad you found us. I understand you wanting to keep the discussion from your family to keep them from worrying. Having a support outlet is important, so please know we are always here for you whenever you need us. We have several people in our community who are healthcare professions that have been surprised by a diagnosis of blood cancer. I wanted to share this article from one of our advocates who talks about her experience as a cancer patient/nurse – click here. Thanks for sharing your story and being part of the community! -Anthony (Team Member)

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