• Any smoldering folks?

    Asked by DianaSMM on Wednesday, August 15, 2018

    Any smoldering folks?

    Is there a sub group for people with smoldering multiple myeloma?

    8 Answers from the Community

    8 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I don't even know what it is... Will have to look it up

      3 months ago
    • SandiA's Avatar
      SandiA

      I have actually heard of it, but not sure there are others on here. Hopefully someone will see this and be able to help out. If there anything the rest of us can do just let us know. Sandi

      3 months ago
    • DianaSMM's Avatar
      DianaSMM

      Hi Folks- Smoldering multiple myeloma is when you have the cancer but not enough symptoms for treatment. It’s called “watch and worry”. Rate of progression varies greatly per person. Because it’s a terminal cancer, standard of care is to only give the treatment when you meet a certain acronym, CRAB. I have back pain and fatigue, no CRAB. 42 yrs old with a 6 yr old. It’s a rough spot to be in.

      3 months ago
    • SandiA's Avatar
      SandiA

      Wow I am so sorry. I had heard of it because my friends mother has smoldering multiple meyloma. She went to a cancer center and basically was told the same thing watch and wait or as you said worry. I know my doctor calls the watch and wait treatment the nail biting treatment. You mentioned back pain, that was one of her symptoms. Major joint pain. She is currently doing well. I hope there are some others on here. I know personally it really helps to talk to others who know what you’re going through.

      3 months ago
    • Julia468's Avatar
      Julia468

      DianaSMM, I have an unusual cancer, midline NUT carcinoma, I'm 37 and have a nine year old. It is very difficult. No one wakes up thinking they will be diagnosed with cancer, but thinking of my daughter and wht she's going through is hard. I try to enjoy all the small moments especially when I feel good. I do a Lot of meditating to not let worrying take over. Stay positive.

      3 months ago
    • GregP_WN's Avatar
      GregP_WN

      DianaSMM, you can search the site and find people with that diagnosis. Just click on the people tab at the top of any page, then look on the left for the search box. Click cancer, then multiple myeloma, then you can look through everyone on the search results for the smoldering type.

      3 months ago
    • 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

      3 months 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.

      2 months ago

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