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Ann
Multiple Myeloma Discussion • August 22, 2024
Managing Extramedullary Relapse?
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Has anyone experienced a relapse with extramedullary disease (not present at diagnosis)? How did your treatment change? Has it been effective at controlling disease and slowing progression? Thanks!
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azbobmorrison
Multiple Myeloma Discussion • August 22, 2024
Planning for the Future & Travel: How Do You Do It?
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May 31 was my 1st cycle and it looks like October we are getting ready for SCT in October. I've had e-coli and covid on the way but all my numbers are coming in line to be able to move forward. My curiosity is how do you think about the future. The doctor informed me at the initial meeting that it could be 2 weeks to 5 years to 10 years to 30 years and that seems hard to plan for. Financially my wife is set but we want to travel and are not sure how to go about it. Should we travel where we can find a myeloma specialist? Do you plan on the short side and hope for the long time? I know there is no set answer but I am curious what anyone else does about there family and preparing for the future.
Thumbnail for How do you distinguish between a diagnosis of myelodysplastic syndromes and acute myeloid leukemia?
Playlist: MDS Basics 1

How do you distinguish between a diagnosis of myelodysplastic syndromes and acute myeloid leukemia?

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DIahanna • Admin
Multiple Myeloma Discussion • August 21, 2024
Webinar Update: Big Medicare Changes Oct 1st
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Hello All, Please be aware that my Financial Webinar for September is being delayed till Oct 1st. The reason is I wanted to have as much information available for you regarding upcoming changes to Medicare prior to the open enrollment period. There are huge changes that you need to be aware of that will impact your cost for Healthcare. Tune in on Oct. 1st 1t 1:00 ET.
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BarbaraH
Multiple Myeloma Discussion • August 21, 2024
High-Risk SMM: Conflicting Advice & Seeking Hope
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Hello! I’m newly diagnosed High Risk IgG Kappa light chain SMM (I say that so confidently, considering I’m only vaguely aware of what that even MEANS, lol). My regular Hem/Onc suggests a ‘watch & wait’ approach but when I got a 2nd opinion they said ‘treat now’, so now I’m waiting on a THIRD opinion. I feel scared & overwhelmed. So much information, so many differing opinions! I’m already tired of doctors & blood draws, & all I see is this stretching out lifelong before me like an inevitable death sentence. Please share with me some hope. I’ve been told that as I am very high risk (due to my TP53 deletion & only having 1 kidney) that although I’m technically SMM I might as well consider myself MM already. Anyone else in this (leaky! Lol.) boat?