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    DianaSMM wrote on Neri's wall

    Hi Nero- I’m Diana with smoldering myeloma and I was trying to understand if your patient has been smoldering for 10 years or dealing with full blown MM this whole time. I haven’t found any folks with SMM and I was curious. Take care.

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    • Neri's Avatar
      Neri

      Hi Diane - he had active Myeloma with chemo treatments from 2008 to 2015. After last chemo cycle in 2015, Myeloma diagnosed as smoldering, no treatments until September 2018 when he relapsed. All the best to you, from my research lots of patients can have smoldering Myeloma without progressing. There's a Facebook page for smoldering Myeloma where you can interact with patients & learn about others with SMM: one is called Smoldering Myeloma & the other is Mgus, Smoldering Myeloma and related neuropathies support. Hope this is of assistence to you. Take care.

      7 months ago
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    DianaSMM wrote on shovelrae1959's wall

    Hi there- I’m curious about your post. You were smoldering for 8years? I’ve been SMM for three years. I’m raising a 6 yr old (I’m 43) and was curious if you had kids at home too and how you’re managing treatment with family

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    DianaSMM wrote on Cinwat's wall

    Hello CINWAT- I’m Diana with SMM. I couldn’t help notice you were smoldering for three years? Is that correct? I’m coming in my third year and I have a Q, now that you are getting treatment are you relieved to be getting help and out of the waiting game or upset that the cancer progressed? I hate waiting for it to get worse so I’m curious about your thoughts.

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    Question: Stage 1

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    DianaSMM asked a questionMultiple Myeloma

    Any smoldering folks?

    9 answers
    • po18guy's Avatar
      po18guy

      Sorry to hear this. Smoldering myeloma is similar to an indolent (slow-growing) lymphoma. Malignant plasma (myeloma) cells are of B-cell origin, and can form tumors either outside of the bones or within the bones in the marrow. A tumor found outside of the bones is called a plasmacytoma.

      This is a rare disease and is related to other blood cancers. I would suggest that you have a look at the Leukemia & Lymphoma Society website (www.LLS.org/) for more information. There is lots of bad news on the web, because most of it is outdated. Several advances were announced in 2017 and hematologists are optimistic that, at the least, it will soon be considered a chronic, manageable disease.

      If there is good news in this, it is that it has been discovered in a smoldering state. Its presence uncovered, it can be watched and treatment may commence when needed. In the meantime, there are patients in clinical trial as we speak, helping to develop the next generation of myeloma treatments.

      You can find myeloma clinical trials here: www.clinicaltrials.gov

      Here are some videos which present the increasing hope against all forms of myeloma: https://www.cancerforums.net/threads/55575-OncologyTube-Myeloma-videos

      about 1 year ago
    • DJS's Avatar
      DJS

      I have not heard the term ‘smoldering’ used, but...yeah, my tests are showing that I have a possibility of multiple myeloma in my future, so I’m being watched closely for any changes in my blood work. I also get PET/CT scans regularly because of my past bout with Non-Hodgkin lymphoma, but I’m not sure that would also track the MM. “Smoldering” sounds kinda sexy; like a louche 40s film noir villainess. So much better than that I-Can’t-Breathe feeling I get waiting to hear what the test results are this time. Good luck to my fellow travelers.

      about 1 year ago
    • Jerseygirl64's Avatar
      Jerseygirl64

      I was diagnosed with smoldering myeloma in October 2018. My primary physician referred me to a hematologist in March 2017 .I went for a bone marrow biopsy in October 2018. I was sent to a hematologist that specializes in multiple myeloma the next month. I had a bone marrow mri. The doctor said I didn't need treatment but would need blood/urine lab work every 3 months

      6 months ago
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