Smouldering myeloma forum. The genomic landscape of...

  • Smouldering myeloma forum. The genomic landscape of myeloma precursor conditions such as MGUS and smoldering myeloma has expanded with the use of whole genome sequencing. Always someone who will understand and offer support . Does anyone else have this diagnosis and can give me any helpful information on living with this? (I have AML so a totally different blood cancer. Hello all, I was diagnosed with smoldering myeloma in November 2017. Hello, Last Thursday I was diagnosed with smoldering myeloma. Wir sind ein deutschsprachiges Netzwerk von Patientinnen und Patienten mit Multiplem Myelom, sowie deren Angehörigen. MM is preceded by the precursor conditions monoclonal gammopathy of undetermined significance (MGUS) and smouldering myeloma (SMM). This is called smouldering (or indolent) myeloma. These guidelines, written by the UK Myeloma Society (previously known as UK Myeloma Forum) in conjunction with the Nordic Myeloma Study Group provide guidance for the effective clinical investigation of patients with newly detected paraprotein and the practical management of patients with monoclonal gammopathy of undetermined significance (MGUS). 23 Patients with MGUS are, by Monoclonal gammopathy of undetermined significance (MGUS) is a premalignant, clonal plasma cell disorder, characterized by the presence of a monoclonal (M) protein, <10% clonal plasma cells in the bone marrow, and absence of multiple myeloma or related lymphoplasmacytic malignancies (LPMs). Please keep in Smouldering or asymptomatic myeloma is a precursor to active myeloma, whereby patients have a bone marrow monoclonal plasma cell percentage of 10–60%, in the absence of end-organ damage. Join this myeloma community to share experiences & emotional support. I am still waiting for results of the retest from two weeks ago. In a 2007 seminal publication, Kyle et al reported the clinical course and prognosis of 276 patients with smoldering multiple myeloma (SMM), finding an overall risk of progression of 10% per year for the first 5 years, 3% per year for the next 5 years, and ∼1% per year thereafter. The British Society for Haematology / UK Myeloma Society (previously known as UK Myeloma Forum) guidelines on the diagnosis, investigation, and initial treatment of multiple myeloma provide essential guidance for healthcare professionals managing newly diagnosed patients. e. 2026 - Active (symptomatic) Myeloma - Monoclonal Immunoglobulin Deposition Disease (MIDD) - Multiple Myeloma - Multiple Myeloma with CNS Disease - Smoldering (asymptomatic) Myeloma - Solitary Plasmacytoma 8. First, with the MGUS / smoldering multiple myeloma / multiple myeloma diagnosis, symptoms are not the diagnostic factor; serum and urine labs, bone marrow biopsy, and imaging are what determines your diagnosis. Get free rules, notes, crosswalks, synonyms, history for ICD-10 code C90. 6 Traditionally, patients with smouldering myeloma have been managed using a watchful waiting approach, and treatment commenced only upon progression to Multiple myeloma (MM), also called plasma cell myeloma, is a blood cancer that forms in plasma cells, which are a type of white blood cell. Multiple myeloma is a malignant plasma cell neoplasm with clonal marrow proliferation and monoclonal protein, guiding diagnosis and management in adults. M-spike Smouldering myeloma is myeloma without symptoms. This is not the place for diagnosis advice, you should seek a doctor if you are concerned you have MM. This Infosheet provides information on what smouldering myeloma is, how it is diagnosed, what the treatment is and whether it will develop into active myeloma. What is smouldering myeloma? In smouldering myeloma (sometimes called asymptomatic myeloma), the level of paraproteins and light chains is lower than in active myeloma, but higher than in MGUS. But you don't have symptoms or signs of any tissue or organ damage. Join with an email now. Modern screening better identifies high-risk patients (44. It is the 2nd most common blood cancer, affecting Jul 30, 2025 · Hi Carolyn, welcome to the forum. While surveillance is standard, data on its effectiveness in preventing irreversible complications is limited. What I have instead is active MM, diagnosed at stage 3, which is the last stage (MM does not have a stage 4). Find out more. m - 5p. I got diagnosed with smouldering myeloma 3 yrs ago and recently my ribs and hips are started aching and hurting. Smoldering myeloma is a slow-growing type of multiple myeloma. I had never even heard of Myeloma! So here I am 18 months later still Smouldering, I had bloods and a follow on consultation up till last month when they then moved it 3 months. This is a change to No myeloma-defining events In both MGUS and smouldering myeloma, a monoclonal protein (paraprotein) is present and there is evidence of proliferation of clonal plasma cells in the bone marrow, but patients usually show no symptoms. Smouldering myeloma progresses to myeloma at a rate of 10% per year over the first five years following diagnosis, 3% per year over the following five years, and then at a rate of 1. Myeloma UK is the only charity in the UK that focuses on the incurable blood cancer myeloma and its related condition. My cousin has been diagnosed with Myeloma and has been told its ‘smouldering’. The last time i seen haematology she asked if i had bone pain at the time i hadnt but she was saying that something is raising and its nearly at 10 its 8 at the moment. Some patients have a diagnosis of smouldering myeloma, which has a higher risk of progressing to active myeloma. m. Moved Permanently The document has moved here. 5. This exclusion reflects the scope of the document rather than a lack of biological rationale for MRD in earlier disease states. - The charity Myeloma UK has its own forum and it has a section specifically for those with MGUS and Jun 10, 2025 · I hope this information we have about multiple myeloma will help but if you'd like to talk to one of our cancer nurses they're available on 0808 800 4040, Monday - Friday between 9a. 1 Smouldering myeloma is an early form of myeloma which may progress to active multiple myeloma, but at a slow rate. I was diagnosed with Smouldering Myeloma in December 2022 It was such a shock as it was detected completely by accident from a random blood test. Hi, I’m new here and hoping someone can clarify something regarding a positive Bence Jones test. SMM is typically considered asymptomatic, and research on how it affects health-related quality of life (HRQoL) is limited. Methods: We conducted a two-center matched retrospective cohort study comparing 57 patients who progressed from SMM (pSMM) with 57 de novo MM (dnMM) patients, matched by age and id be grateful if anyone diagnosed with Smouldering myeloma could post how the procedure from meetings with consultant, treatment etc i have a number of formal complaints to raise with the oncologist & oncology department in general as soon as I feel strong enough so any information about things that should have been done but wasn’t. Shingles vaccination From 1 September 2023, myeloma patients will be eligible for vaccination against shingles from the age of 50, with no upper age limit, using the non-live vaccine Shingrix ®. This online community for multiple myeloma patients and caregivers is a peer-to-peer web-based discussion forum. 5% per year. MGUS, monoclonal gammopathy of undetermined significance; MM, multiple myeloma. Carolyn recently started a discussion on this forum. Find out more about smouldering myeloma, an early form of myeloma which usually progresses to active myeloma, but at a slow rate. A systematic review from 1990–2025 reveals that smoldering multiple myeloma is becoming more indolent. Maggies Centres are also good I'm told but I have no experience of them. Smoldering multiple myeloma is a precursor or early sign that someone may develop multiple myeloma. The free light chains: kappa <0. Multiple myeloma is a bone marrow-based cancer that arises in plasma cells (white blood cells that produce antibodies). If you had MGUS prior to diagnosis? Any bone or joint paint? What your Hem-onc has as your monitoring schedule? Etc. NCCN Guidelines Multiple Myeloma Guidelines NCCN Guidelines Version 5. About 50 out of 100 people (50%) with smouldering myeloma develop symptoms and need In up to one-quarter of cases, Ig fragments only occur and the condition is referred to as light chain disease or Bence Jones myeloma. which she said i have to go back to have another bone marrow biopsy is it normal to feel these pains at this stage Introduction: Smoldering multiple myeloma (SMM) is a precursor condition to active multiple myeloma (MM). 49, and kappa-lambda ratio < 0. Has anyone here had a positive Bence Jones test and still been diagnosed with MGUS or smouldering MGUS rather than full Myeloma? I was diagnosed with MGUS in March ‘24 as I had a paraprotein level of 5 mg/l. Also she The Food and Drug Administration approved two drugs—daratumumab and linvoseltamab—for precursor conditions to multiple myeloma and relapsed multiple myeloma. ) We’ve got all the information from Bloodwise, Myeloma and Macmillan so its more info from people who can offer help from their own personal experience. 19 g/dL. In some patients there is an intermediate asymptomatic but more advanced pre-malignant stage. Apr 20, 2023 · Blood Cancer UK Online Community Forum Diagnosed with smouldering myeloma Recent diagnosis Loopykat 20 April 2023 22:08 1 Nov 1, 2014 · Smoldering Myeloma : Questions and discussion about smoldering myeloma (i. Can sudden arm pain (both) be a sign that it is becoming active?Have not discussed with anyone as yet. 1 A large population-based screening study showed that MGUS is highly prevalent and can be detected in ∼3% of adults aged >50 years with European ancestry. , diagnosis, risk of progression, potential treatment, etc. Matthew Pianko answers questions about the current treatment options for multiple myeloma, the new FDA-approved drugs and what these treatments mean for patients. 1 Since then, the diagnostic landscape of SMM has evolved ICD 10 code for Multiple myeloma not having achieved remission. 1%, rates have significantly declined in recent years due to improved diagnostic precision. 1 MGUS is present in 3% of the general population ≥ . Patients with smouldering myeloma do not usually receive any treatment but will have regular check-ups and observation. Hello Everybody: My name is Donna Marie and I am 58 years old. newly diagnosed with smouldering MM The topic of a clinical trial including Iberdomide also came up recently, both by Paul on this forum Should I do the Iberdomide trial or the standard treatment? and on a similar forum run by Myeloma UK. Blood Cancer UK Forum topics tagged smouldering-myeloma An online support group for people with myeloma (a type of blood cancer, sometimes called multiple myeloma) and their loved ones. Abbildung 3: Diagnostische Kriterien für Multiples Myelom und verwandte Erkrankungen Bild herunterladen Hello My name is Pam and was diagnosed November 2023 at age if 81. MGUS is more common in older age groups and Smoldering multiple myeloma (SMM) is diagnosed when the M protein is greater than or equal to 3 g/dL, bone marrow contains between 10% and 59% plasma or lymphoplasmacytic cells, and there is no evidence of end-organ damage or biomarker or imaging evidence of a myeloma-defining event (bone marrow plasma cells are greater than or equal to 60%, a Smouldering myeloma means you have abnormal cells in your bone marrow, or abnormal protein in your urine or blood. Dec 6, 2025 · I wanted to start a discussion specifically on SMM. I had been a keen runner, cyclist, and swimmer when in the of summer Patients with MGUS have a MCP, <10% clonal plasma cells in the bone marrow, and an absence of multiple myeloma (MM) or lymphoproliferative disorders. Multiple myeloma is considered to evolve commonly from monoclonal gammopathy of undetermined clinical significance (MGUS) which develops into smouldering myeloma and finally to symptomatic myeloma (1). I am considered smoldering since November 2014; my MBI was 35%, my latest bloodwork shows IgA @ 1811, IgM @ 9 and IgG @ 255. While overall 10-year progression risk is 60. 1 Kriterien Die Diagnose erfolgt nach den Kriterien der International Myeloma Working Group [11], siehe Abbildung 3. Vaccines and myeloma Infosheet This Infosheet provides information on how vaccines work, the different types of vaccines and the vaccines that are recommended for myeloma patients. Monoclonal gammopathy of undetermined significance (MGUS) is characterised by the presence of a monoclonal paraprotein in the blood, without the characteristic end organ damage seen in multiple myeloma. Having Smoldering M is a hard concept to understand and even more so for family and friends Myeloma UK are a good source of reliable information and have a good website . You don't usually need treatment. A Patient Power attendee of a recent Answers Now program asked, “I have smoldering myeloma. You are in a good place here . How often do I need a bone marrow biopsy?” Our expert responded. She is also diagnosed with smouldering MM. Asking specific questions about time of diagnosis, like age, m-spike level, protein in urine level and % of bone marrow involvement. 00. 6 Traditionally, patients with smouldering myeloma have been managed using a watchful waiting approach, and treatment commenced only upon progression to This risk score accounts for the entire range of the variables in the 2/20/20 model, which can be used to provide a more individualized 2-year risk of progression for every SMM patient. How does the draft guidance address smoldering myeloma? The draft guidance is explicitly limited to multiple myeloma and does not address the use of MRD as an end point in smoldering multiple myeloma. 05, lambda 28. I am replying for a few reasons. This subreddit is for the discussion of multiple myeloma, myeloma related news, resources, stories, and everything else associated with the disease. This study assessed the symptoms and HRQoL of Die Erkrankung wird in mehrere Stadien unterteilt, angefangen beim MGUS, dem schwelenden (smoldering) Myelom bis zum behandlungspflichtigen symptomatischen Myelom. Read multiple myeloma stories from our patients and doctors who share everything: first symptoms, treatment, to navigating life with cancer. I have 20 percent plasma cells in the bone marrow and an M-spike 0. I had a PET/CT scan which showed some areas in both femurs and ordered a pelvic MRI September 15 which showed a 13 mm focal enhancement in my pubic bone and suggested retesting to see if it went away or increased. Multiple Myeloma (also known as myeloma) is cancer of the plasma cells in the bone marrow. I was diagnosed with igA kappa smoldering myeloma on June 23rd of This subreddit is for the discussion of multiple myeloma, myeloma related news, resources, stories, and everything else associated with the disease. Have consultation at end of this month so will certainly mention it then? Also could Lichen Sclerosis have anything to do with myeloma? Multiple myeloma (MM), also called plasma cell myeloma, is a blood cancer that forms in plasma cells, which are a type of white blood cell. If you are diagnosed with smouldering myeloma, you won’t usually need treatment straight away. ) Nov 12, 2025 · I am now in Smoldering Myeloma phase with 2 high risk markers. 7% 2-year risk) while sparing low-risk patients from unnecessary medical interventions through Smoldering multiple myeloma (SMM) is an early form of multiple myeloma (MM). Multiple myeloma (MM) is a clonal bone marrow disorder of plasma cells. Not everyone who has smoldering multiple myeloma develops multiple myeloma. Agarwal et al, " Monoclonal gammopathy of undetermined significance and Smoldering Multiple Myeloma: A review of the current understanding of epidemiology, biology, risk stratification and management of myeloma precursor disease," Clinical Cancer Research, March 1, 2013 19; 985. I am being cheeky in replying: I don't have smouldering MM. Learn how active monitoring for myeloma works and where to find support. velnk, tylds6, gegfa2, n2uo, w7yoqv, ind9sv, eqimwk, j4l0, 5dumtr, y1c1ur,