My wife was diagnosed with multiple myeloma in July 2024. She is 61 years old. She used to exercise an hour a day spinning and swimming prior to the diagnosis. She may be getting stem cell transplant by the end of the year in Pittsburgh at Hillman Cancer Center. We are looking for feedback from someone who has gone through stem cell transplant recently. We are looking for information regarding side effects especially after discharge from hospital, recovery, ability to go back to gym, traveling, socializing etc. Thank you.

Hello everyone! I achieved MRD negativitity a couple of Months ago after 5 rounds of DVRd and 3 rounds of KRD (together with keto, fasting and vegan food). I decided not to go through with ASCT. I feel 100% well and my blood counts are all normal apart from low white blood values. My doctors says it is because of my lenalidomide maintenance. My doctor also wants me to continue with Zoledronic acid once a Month. Not because there is any current need but as a precaution. Anyone with similar experience here that can tell me for how long you typically continue with Len and Zoledronic acid after achieving MRD neg?

What is the name of the shot we get when our neutrophils are low?

I was diagnosed with PCL in Jan 23 and began isatuximab (S), VRD and was in remission in 4-5 months, followed by and SCT last September. MRD two months later was negative. However, due to high risk disease (78% plasma cells in blood and 3 markers at diagnosis), my specialist thought it best to resume SVR (no dex thankfully). I have remained in remission but I think the Velcade is affecting my kidneys. I had renal insufficiency at diagnosis which markedly improved. After stopping Velcade et all prior to the SCT, my renal function normalized and stayed that way until after beginning maintenance therapy. I had severe GI SE from the Velcade (constipation) and finally my team agreed to cut the dose in half. Much improved, though my renal function is still off with an estimated GFR in the 50's. My question is, if you have achieved remission or close to it, what is your maintenance therapy? My team is understandably worried that PCL will relapse but I am wondering if I can risk stopping the Velcade. I know Kyprolis is an alternative but it can affect the heart, so given my history, I would chose renal damage over heart. I know this is an impossible question as so little is known about PCL. I suppose in the long run, I can stay with it as long as my kidneys don't get worse. Thanks and good cheer to all. Deborah

question, everybody.....in regards to drinking at least 64oz. of water.....is anyone just drinking distilled water so you don't get the extra minerals in your water.....someone mentioned distilled water....we buy bottled water but not distilled....my husbands creatine level is at the top 1.3 and he drinks plenty of water but wondered if switching to distilled would make a difference.

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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