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Camaroman
Multiple Myeloma Discussion • April 17, 2025
Questions on Skipping SCT & Xgeva vs. Zometa
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Was diagnosed in 2004 with MGUS, 2005, smoldering myeloma. Since '05 only being monitored every 3 months with blood work, Igg is now at 5400, was on Zometa then switched to Xgeva(prolia). Now lesion found on front posterior rib and doc wants me to go on the 3-4 cocktail of meds and then to a SCT, don't really want to do the SCT, 2 questions for everyone here, how many opted out of SCT and just stayed with the cocktail of drugs and how your doing, (2) how many are on Xgeva compared to Zometa now and which are better in your opinions.
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gknautz
Multiple Myeloma Discussion • April 16, 2025
Understanding Relapse with a Clear Biopsy
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Basic question here: post BMT my cytogenetics/bone marrow biopsy showed no evidence of disease (awaiting MRD) and all labs normal. Was told that disease will come back, my question is: is the cancer cells somewhere in the bone marrow so low that biopsy does not see it and will not see it until it grows and starts to crowd out the normal cells in the marrow?
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MLichtenstein63
Multiple Myeloma Discussion • April 16, 2025
Getting Back to Weights With Myeloma: Tips?
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Before I started treatment three months ago I was weight training One day a week doing deadlifts, bench press, and other heavy weight exercises. I am ready to go back To the weights. Obviously will need to modify these workouts. Does anyone have any idea the best type of Weight workouts to do with myeloma? I am sure Skeletal and rib strengthening is most important. Any thoughts?
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rubyCrocodile
Multiple Myeloma Discussion • April 16, 2025
Rising Kappa Levels & Relapse Concerns?
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Hi All, What are some of the signs of a relapse after SCT? My Kappa's started to move up since early march and now it's at 45 mg/dl. That is causing the ratio to go up around 3.5. My M protein is still undetected. Before the Kappa's started to go up my maintenance treatment was stopped for 3 weeks due to flu. Thank you!
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ChioOsuna
Multiple Myeloma Discussion • April 15, 2025
Share Your Exercise Experience in a New Study
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Share Your Exercise Experience - New Research Study Hi everyone, we wanted to let you know about an important new study looking at physical activity in blood cancer patients. Whether you're highly active or find it challenging to exercise, your experience is valuable to this research. About the Study: Quick 8-minute survey Led by Memorial Sloan Kettering Cancer Center & HealthTree Foundation Focuses on activity levels AND barriers to exercise All responses are confidential The results could help develop better support systems for patients struggling with physical activity during treatment and recovery. Who Can Participate: Age 18+ Diagnosed with blood cancer or precursor condition Any activity level is welcome https://healthtree.org/myeloma/curehub/private/research/YS80V1G0YXT0iL8q3gMT?utm_source=social+media&utm_medium=connect&utm_campaign=physicalactivitysurvey&utm_content=general Let's help researchers understand our community's real experiences with physical activity. Every response matters! Feel free to ask any questions below or contact support@healthtree.org.
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cncahoon • Admin
Multiple Myeloma Discussion • April 15, 2025
In-Person Myeloma Talk In Hicksville, NY
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I thought some might be interested in this event. One of the doctors we recently did a webinar with is speaking. If you are in or around Hicksville New York take a look.
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Deb09
Multiple Myeloma Discussion • April 15, 2025
Cytoxan Treatment: What to Expect?
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My husband was diagnosed with high risk (stage2)Multiple Myeloma Dec 2024, blood results from his annual physical & asymptomatic, golfer, fit & age62. He’s been on 4 drug regiment with minimal side effects, Dara, Dex, Velcade & 25mg Revlimid for 4 cycles & then after his restaging with results not where they want for SCT scheduled in June, they added 2 more cycles, will wait for another bone marrow biopsy, it’s been 15% since the start of his treatment (no change) his M-spike has gone down from 3.6 to 1.9 but still not zero. They are now suggesting he will need to have Cytoxan chemo treatment (12hr IV) 2weeks before his T-Cell collection. Has anyone had Cytoxan & how did you handle the treatment & managing side effects?
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Dave Braucht
Multiple Myeloma Discussion • April 14, 2025
Protecting Your Finances from Online Scams
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Stay Safe Online: A Word from Your Fellow HealthTree Member Hi HealthTree Community, As a retired IT security specialist with 35 years in the field (25 specifically in security), I've seen countless scams come and go. The underlying goal remains the same: to trick you into giving up your personal information or access to your accounts. While the delivery methods have evolved from primarily email to include social media, messaging apps, and more, the core tactics haven't drastically changed in the last 25 years. Think of denial-of-service attacks, spreading malware, and clickbait – they're all repackaged versions of old threats. Here are some common scams to watch out for: * Fake Delivery Notifications (UPS, FedEx, etc.): Be extremely cautious of unsolicited messages asking you to click a link to update delivery information. Legitimate carriers rarely, if ever, request personal details this way. Never click the link or provide information. * Requests for Personal Information (Credit Agencies, Banks): Scammers will often impersonate trusted entities, claiming they need to "verify" or "update" your information. They might even have some of your details obtained from previous breaches. NEVER give out sensitive information like passwords or full credit card numbers (especially the CVV code on the back). * Fraudulent Bank Calls - Beware of Number Spoofing! This is a critical point: scammers can manipulate their caller ID to make it look like they are calling from your legitimate bank, credit union, or other financial institution. The number displayed on your phone might be identical to the real number. Do not be fooled by this! * Fake Toll Booth Invoices: Be wary of unexpected messages claiming you owe money for tolls, especially if the contact number has a foreign country code. Verify any such claims through official channels. * The "Too Good to Be True" Offer & Gift Card Scam: Be extremely cautious of online offers that seem unbelievably cheap. A common tactic is for scammers to advertise high-value items (like a $500 product) at a drastically reduced price. They will then ask for payment in a non-traceable form, often requesting multiple photocopies or photographs of the back of Apple Gift Cards in various denominations (like five $50 cards). Once you send them the gift card codes, they redeem the value, and you receive nothing in return. This is a classic scam. Remember the old adage: if it looks too good to be true, it almost certainly is a scam. This type of scam, using things like Apple Gift Cards or even demanding payment via stamps in the past, has been around for a long time and continues to resurface in different forms. Don't fall for it! Illustrating the Threat: The Movie "The Beekeeper" If you want a dramatic, albeit fictional, illustration of how devastating online scams can be, I recommend watching the movie "The Beekeeper." While it's an action thriller, the plot revolves around a sophisticated hacking operation that targets vulnerable individuals, specifically an elderly woman with limited tech knowledge. These criminals manage to steal millions of dollars from her through deceptive online tactics. This movie, while not entirely realistic in its action sequences, highlights the very real danger of cybercrime and how easily individuals can be exploited if they aren't careful. But there are other organization similar to what you see in the beginning of the movie. It’s a large building or office space with scammers trying to entice people out of their money using a of their money, using various techniques. Don’t fall for the scams. Protecting Yourself: Here are some crucial steps you can take to enhance your online security: * Install a Reputable Security Software Package: This includes antivirus and anti-malware protection. * Use a Personal VPN (Virtual Private Network): A VPN encrypts your internet traffic, making it harder for others to snoop on your online activity. Many free and paid options are available. I personally use a paid service that covers multiple devices for a reasonable monthly fee, protecting both my wife and me across our phones, tablets, and computers. * Dedicated Financial Computer: Many businesses follow a best practice of using a DEDICATED computer solely for financial transactions. This computer does NOT have social media, messaging apps, or other general internet browsing activity. Consider doing the same at home. You can purchase an inexpensive laptop and use it ONLY for online banking, bill paying, etc. DO NOT use it for Facebook, email, or anything else. This significantly reduces the risk of malware or phishing attempts compromising your financial accounts. * Be Extra Cautious on Mobile Devices: Smartphones often lack the robust security measures we have on our computers. Be especially vigilant about links and requests for information on your phone. * Practice Defense in Depth: Just like businesses use multiple layers of security (firewalls, intrusion prevention), we need to layer our home protection with antivirus, VPNs, and cautious online behavior. Remember: Even if the caller ID looks legitimate, never give out sensitive information over the phone if you didn't initiate the call. Never send gift card codes or photos of gift cards as payment for goods or services from someone you don't know and trust. If an offer seems too good to be true, it almost certainly is. If you have further questions or need financial coaching, please don't hesitate to reach out to me or one of the other financial coaches here at HealthTree. We're here to help you navigate not just your health journey, but also your financial well-being in a secure manner. Stay safe online! Best regards, Dave Braucht HealthTree Financial Coach
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SteveD
Multiple Myeloma Discussion • April 14, 2025
Sharing My 4-Year Myeloma Journey
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Four years ago today, my bosses and best work friend cornered me and said "You don't look good and you're not moving around right. You need to go to the emergency room." Thus started my myeloma journey. Kidney impairment sent me off a cliff but getting transferred to Emory-Winship and straight into a clinical trial brought me back. I don't remember much from the first 3-4 days in the hospital but the rest of 2021 brought induction therapy with DaraRVD, khyphoplasty to shore up my L5, and a stem cell transplant. I have had slow, steady progress since then. I am still MRD+ but aside from a little fatigue, my quality of life is back to 100%. It's good to be in...
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Rdp188
Multiple Myeloma Discussion • April 14, 2025
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