Connect Victory Friday: Share your wins, big or small, from this week here. https://healthtree.org/myeloma/connect/group/87tPU6BgpkqMXXCv5kke

HealthTree is currently interviewing patients who have received the bispecific antibody talquetamab (TALVEY). This bispecific antibody that targets GPRC5D. It works by attracting the innate immune system to come and kill the myeloma cells. If you have received talquetamab (TALVEY) and are interested in participating, please react to this post so we can provide more details about the study by mail. If you haven't received TALVEY but know someone who has, please share this post with them.

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!

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.

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.

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?

I used to be able To get into this site so easily now I am having a hard time. Can someone explain to me how I can get into see the videos especially on nutrition and wellness

Hello! I’m Yvette, a social worker from Kenya, supporting Multiple Myeloma patients. One helpful nutrition tip is to eat small, frequent meals throughout the day. This approach helps ensure your body gets adequate calories, nutrients and can also help minimize treatment-related issues like nausea.

OK, potentially weird question. I'm 53, single, only a few months into my diagnosis. SCT coming in October so the next several months are going to be a wash. My only child is starting her senior year in high school, so she'll be out of the house in a year. So I'm thinking that, if my health is stable, I'd like to consider dating again. Is anyone here actively dating? Do you disclose your condition on dating apps?

I'm interested in evidence-based nutrition information for MM, and have recently discovered the work of Dr. Urvi Shah. Dr. Shah has done research with HealthTree and has some videos here as well. I'm eager to learn more about her work and try to put it into action in my life. Here's a brief video: https://www.youtube.com/watch?v=1_mli23UD2M

Everyone shod rat sometime with or without MM's

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Diagnosed Mgus IgGkappa with 0.05 mspike 6/23 . All markers in normal range as of 5/24. 70 on 7/31/24 other then this M spike excellent health no medications, been seeing intern once yr. Hematologist once to just wait and watch mgus markers. Asking for any other proactive treatment, specail diet, other actions to be doing now to reduce m spike and possibly of progression to myeloma??

I'm listening to Beat Back Cancer Naturally by Dominic Brandy, M. D. on Audible and it is helping me make the necessary changes in hope it will make a wonderful difference in my health. Plant based nutrition, specific supplements, exercise, stress reduction. 👍

Hello All, first ever question, however have read prior postings and have gleaned some very informative answers so here goes: Do to issues with side effects my 28 day 10mg Lenalidomide maintenance regimen was reduced to 5mg, 28days. With each delivery comes a patient guide, side effects page, and my insurance carrier's retail price. I had expected a reduction in the retail price as the dose was cut in half and was very surprised that the 5mg price was exactly the same as the 10. Asking if anyone knows and/or understands how prices are determined and set. Things that make me go MMMMM. Thanks in advance for the opportunity.