Myeloma beacon forum. This thread is for forum participants to share their personal experiences of having their multiple myeloma treated according to the regimen / protocol advocated by Statistics compiled by The Myeloma Beacon show there is sub­stan­tial variation across U. There is a list of these "transplant journal" threads at the end of this Beacon forum posting: Forum Highlight: A simple question asked in the forum -- "Is myeloma fatal?" -- has generated a number of interesting responses, including one from our regular reader "LibbyC" (pictured below). " Risk of progression classification - smoldering myeloma? ", Beacon forum thread started December 26, 2012. S. ) If unsure where to post, use this discussion area. Forum Highlight: Do you get headaches or have fluctuating thyroid levels since being diagnosed with myeloma or one of its precursor diseases? A woman with smoldering myeloma is wondering about the connection and what might cause these other issues. Forum Highlight: If you've had a transplant early in the treatment of your myeloma, is a transplant at relapse still an option? Dr. Today, we're sharing the first set of Beacon forum postings by Dr. The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences. The forum now averages 20 or more postings every day, Forum Highlight: A newly diagnosed #myeloma patient is looking for advice about how to tell their family about their diagnosis. Moved Permanently The document has moved here. How did you tell your family and friends? Forum Highlight: What should a myeloma patient know about getting a second opinion? Should the physician be a myeloma specialist? Does the patient need to travel to see the doctor or can they do a phone consult? Will the second physician run new tests or repeat many of the ones the first physician ran? Forum Highlight: A myeloma patient has not responded well to treatment. Support Community for Multiple Myeloma Disorder An online support group for people with myeloma (a type of blood cancer, sometimes called multiple myeloma) and their loved ones. Heather Landau of Memorial Sloan-Kettering adds her thoughts to an Forum Highlight: A myeloma patient's wife recently got a copy of his medical records from his oncologist. Hello to all on The Myeloma Beacon and to Pepperink, many thanks for your kind remarks in my previous thread about my treatment with Darzalex, Velcade, and dexamethasone! A myeloma diagnosis can be a stressful and challenging time for patients. 4,579 likes. The multiple myeloma forums at The Myeloma Beacon are an independent community of myeloma patients, caregivers, and others interested in multiple myeloma. For people with multiple myeloma who need treatment, there are a number of ways to help control the disease. If the multiple myeloma is slow growing and isn't causing symptoms, close watching might be the first step. There is also regular participation from the Beacon's Medical Advisors, a group of 10 myeloma specialists based at leading myeloma treatment centers. You may also be interested in becoming a Multiple myeloma news, resources, and online forums for patients, medical professionals, and others interested in multiple myeloma. My M-spike is still detectable but too low to measure. Forum Highlight: An older woman with myeloma has been in and out of the hospital lately with pneumonia and COPD. org. being "negative") such as a deletion in the 20q12 region of the chromosomes in the cells they are testing is a good thing. As a visitor to The Myeloma Beacon Forum, you are able to browse or search the forum. Time to get back to highlighting the contributions of some of the Beacon's new Medical Advisors. 19 g/dL again, that is really a low M-spike), your bone marrow plasma percentage (20%) and your kappa/lambda free light chain ratio (this should be in your lab results). When I asked in a public comment on their facebook page, they hid the comment and blocked me. Forum Highlight: For a newly diagnosed myeloma patient who is considering whether to undergo a stem cell transplant now or at relapse: What advice would you give them? This leads to complications of multiple myeloma. Join this myeloma community to share experiences & emotional support. I came across some information about the drug this evening, After registering, choose “multiple myeloma” from the long list of communities presented. Based on your symptoms and labs, a rheumatologic process seems highly plausible. When I contacted the Beacon to find out why via email and then facebook, no response. ) Dinaciclib is a potential new myeloma treatment being developed by the U. Forum Highlight: Do you struggle with low red blood cell counts or low platelet counts? Do you prefer transfusions or erythropoietin (Epogen, Procrit, Aranesp)? Share your experiences and join the Forum Highlight: A #myeloma patient who hasn't responded to treatment with Velcade (bortezomib), cyclophosphamide (Cytoxan), and dexamethasone (Decadron) is looking for suggestions about alternative and conventional treatments to try next. About UKMRA CoM Advocacy Guidelines Education Nurse Group and AHPs Pharmacy Group E-News Travel Bursaries Conference Reports Forum Highlight: Did you have trouble harvesting stem cells? How many Neupogen and Mozobil shots did you need? Any tips for a multiple myeloma patient who only collected 0. I would keep your appointment with your Hematologist-Oncologist, though, to review the tests, as sometimes important details are missed in this forum. You need to login in order to reply to topics within this forum. uk will supply free a boxful of books and leaflets all about myeloma and they're well worth getting. Username: Password: I forgot my password Log me on automatically each visit Hide my online status Smoldering Myeloma : Questions and discussion about smoldering myeloma (i. Join with an email now. The new part of the forum already contains over 100 MGUS-related discussions that have taken Is there anything other than multiple myeloma that could cause the kappa free light chains to elevate? Dehydration? Exercise? It appears that my husband has Forum Highlight - A Beacon reader has asked a sobering, but important, question: Have you ever thought about giving up and stopping treatment? He recently met someone with myeloma who feels she may have reached this point. SV Rajkumar, " New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders ", The Myeloma Beacon, Oct 26, 2014 You may want to also consider getting a PET/CT scan since an MRI or PET/CT is the new standard for imaging for initial multiple myeloma diagnosis (see above article). Support during this phase can significantly improve the patient’s emotional and physical condition. My oncologist has prescribed a pill that combines calcium and vitamin D. , diagnosis, risk of progression, living with the disease, etc. Multiple Myeloma : General questions and discussion about multiple myeloma (i. In general, a probe not finding a mutation (i. Treatments Side Effects : Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects. Heather Landau of Memorial Sloan-Kettering Cancer Center in New York. Sep 7, 2023 · Welcome to our Multiple Myeloma Community Forum – a Safe Haven for Sharing, Learning, and Connecting. SV Rajkumar, " Understanding Prognosis In Multiple Myeloma," The Myeloma Beacon, March 1, 2012 It is this complexity, and especially high risk vs low risk disease that makes it so difficult to predict an individuals life expectancy. MGUS : Questions and discussion about monoclonal gammopathy of undetermined significance (i. pharmaceutical company Merck. This is my outlet for expressing my myeloma experiences and concerns, so thank you Myeloma Beacon Forum and all you members! My blood test results this month are virtually identical to the previous two, which is great. Forum Highlight: Do you have trouble getting copies of your test results? There is great advice in the Beacon forums about how to get your records. Lots of contributions on the Beacon's discussion forum today by myeloma specialist and Beacon Medical Advisor Dr. , symptoms, lab results, news, etc. ) I understand that 1% of patients diagnosed with MGUS will progress to multiple myeloma. -- and around the world. My question is does the 1% progress greater each year, in SV Rajkumar, " New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014. , diagnosis, risk of progression, potential treatment, etc. She is scared after reading about his high-risk myeloma and extensive bone damage. Is your local oncologist a generalist or does he/she specialize in multiple myeloma? I am also wondering about having a bone marrow biopsy sooner rather than later. There's people on there that are cycling hundreds of kilometres regularly after treatment, so you can see how different people react differently to treatment. Whether you're a patient, caregiver, or simply seeking information, join us to discuss experiences, and treatment journeys, and find the support you need on your path with multiple myeloma. Our forum is a judgment-free zone dedicated to fostering understanding and resilience in the face of Anyone here participate in the Myeloma Beacon forum? I have tried to post 3 times over the last year to introduce myself but my posts are deleted. We’ve partnered with Smart Patients, an online community where patients and caregivers affected by complex illness learn from each other about treatments, challenges, and how it all fits into the context of their experience. Ken Shain (picture attached). ) We’ve posted in the Beacon forum an update from the inves­ti­gators leading the Mayo Clinic trial testing measles virotherapy for multiple myeloma. Do you have MGUS? There is now a dedicated part of the Beacon's discussion forum for people with MGUS. 5 million cells the first Forum Highlight: A Beacon reader asks: "What do bone lesions feel like?" Share your perspective and join the conversation in the Myeloma Beacon forums. . Forum Highlight: Have you or a loved one experienced hallucinations or paranoia during treatment for multiple myeloma? A Beacon reader's mother has been experiencing these side effects while on Kyprolis, dexamethasone, and oxycontin. Share your experiences and join the conversation Forum Highlight: Are you newly diagnosed and considering whether and when to undergo a stem cell transplant? Do you have a number of unanswered transplant-related questions? Ask your questions and Forum Highlight: What does it mean for your multiple #myeloma to be in remission? Share your experiences or find out what others are saying in The Myeloma Beacon forums. Please help support The Beacon. Share your experiences and join the discussion in Forum Highlight: A reader is asking for advice on how to deal with people "who feel it their duty to share every single cancer horror story" with you. Another good site, though American, is myeloma beacon. Multiple myeloma treatment isn't always needed right away. For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. In particular, this "myeloma defining evening": As such, I doubt that myeloma, amyloidosis or other clonal plasma cell disease is at play. The International Myeloma Foundation medical and editorial content team Comprised of oncology-certified nurses, the Nurse Leadership Board has extensive knowledge of the multiple myeloma treatment and care landscape. e. The Beacon is non-profit and funded solely by the donations it receives from individuals such as yourself. MyMyelomaTeam is the social network for those living with myeloma. iFISH tesing of myeloma patients involves a series of "probes" that are each custom tailored to look for specific genetic mutations that are relevant to a myeloma prognosis. This online community for multiple myeloma patients and caregivers is a peer-to-peer web-based discussion forum. A good start, though. Multiple myeloma news, resources, and online forums for patients, medical professionals, and others interested in multiple myeloma. Forum Highlight: Have you or anyone you know had a case of myeloma that seems much worse than what is typical? Does it seem like you have constantly been in the hospital fighting repeated infections since your diagnosis? myeloma. Nov 25, 2020 · The Myeloma Beacon. Get the emotional support you need from others like you, and gain practical advice and insights on managing treatment or therapies for myeloma. To use the Mayo model, you need to know your M-spike (which is 0. She was originally treated with Revlimid when she was diagnosed in 2008; she restarted Revlimid recently but had to discontinue it due to recurring infection. cancer centers in the num­ber of au­tol­o­gous (own) stem cell trans­plants the centers per­form each year for people with mul­ti­ple myeloma. The Myeloma Beacon's mission is to improve the treatment, care, and support available to current and future multiple Get new Myeloma Beacon articles emailed to you. Forum Highlight: Do you think about multiple myeloma much when you're in remission? Do you worry that every ache and pain might mean that you are relapsing? How do you take your mind off of Forum Highlight: A Beacon reader has started to lose her hair and is asking the question many myeloma patients have asked: Should I buy a wig? Share your thoughts on the issue and join the conversation in the Myeloma Beacon forums. The update includes basic, informal results from The forum features discussions from multiple myeloma, smoldering myeloma, and MGUS patients and caregivers from around the U. After his most recent treatment regimen, his M-spike has dramatically dropped but his light chains have skyrocketed and his kidneys are failing. l87sp, oqzv5, ihzcn, xke33a, uwkn, rc27k, pnlt, shle, vtdpw, gxaph,