Currently on maintenance after stem cell transplant in December 2024. I am doing 8 weeks of Weekly Velcade, Darzalex every other week, and 25 mg Revlimid 14 on 7 days off. I am also taking 40 mg dexamethasone 1 x week in treatment days. After 8 weeks, I’ll be on 10 mg Revlimid daily and Darzalex 1 x month. I want to talk to doctor about discontinuing the Dex. I watch a health tree video from last November where a doctor said he did not give steroids to patients in maintenance. Does anyone else not have to be on dexamethasone for maintenance? I have never had a bad reaction to any of the shots and do not have any pain other than from being an active 55 year old . Thanks in advance.

I am about to receive Car-t as a 50 year old in good health (I know I don't look sick). I work 100% remote and I'm wondering what my days are likely to look like. I'm told my "tumor burden" is low so I'm expecting some fever and maybe some tiredness but wondering if it's likely I'll have energy to work some or should I hang up that idea? I'm not looking for horror stories just some easy advice. I do have vacation time I can use but working might provide some distraction like it did during my SCTs.

I was diagnosed with Myeloma last May. I was put on Darzale for my maintenance 3 months ago a i have developed terrible neuropathy in my hands and feet. Besides pain meds has anyone found anything else that helps with the pain? I appreciate any recommendations. Thank you.

Has anyone else developed a secondary disease called myelodisplastic syndrome as a result of treatment for multiple myeloma? I am currently being tested for this after my most recent bmb revealed a new 20q deletion on my cytogenetic test.

Friendly reminder for the Amyloidosis Support Group in-person meeting coming tomorrow: Philadelphia- Amyloidosis Support Group Meeting - Saturday, April 26th, 2025 https://lp.constantcontactpages.com/ev/reg/2cwnpee Portland, Oregon- Amyloidosis Support Group Meeting Saturday, April 26th, 2025 https://lp.constantcontactpages.com/ev/reg/bhvsbvx More Info at https://www.amyloidosissupport.org/ https://www.amyloidosissupport.org/webinars.html

My numbers increased a lot after initial six months initial drd treatment does this mean I have functional high risk mm?

I have been battling Multiple Myeloma for seven years. I have had two SCT. I have been on just about every medication and am now on Tclistamab which is different than a T-cell transplant. I have been on it for a year and I have been in remission since I started taking it.

I'd like to heat from you. If you've received financial support from a non-profit or pharmaceutical company, please let me know. And how-much! This matrix is helpful to us in-house and helps us to determine our level of support to you and keeps this program going.

What support groups are available for the caregivers?? Thank you, -Lindsay

Hi Everyone, Have any of you been asked to complete a PRO survey during your treatment? As you know, PRO stands for Patient-Reported-Outcomes. These surveys are intended to help the research and healthcare communities understand the impact of medical treatments on patients in terms of side effects and disease symptoms. Personally, I have completed such surveys and have found them to be somewhat frustrating, primarily because they tend to be too black or white and lose the richness of nuance and personal experience that are better expressed in my own words. If someone has experience of PROs, whether positive or negative, I would welcome the sharing of your experience. Did the survey capture the reality of your myeloma experience? Were you satisfied that your answers were providing helpful information about your experience to the research or healthcare team? Did you invest time and effort in your responses or did you simply respond to satisfy the team's request? Finally, do you feel that the survey captured the range, intensity, and duration of the side effects you experienced? Thank you in advance for sharing. And good luck on your myeloma journey

Is anyone who is NOT diabetic taking any GLP-1 receptor agonists (GLP-1s) anti-obesity medications like Dulaglutide (Trulicity), Exenatide (Byetta, Bydureon), Liraglutide (Victoza, Saxenda), Lixisenatide (Adlyxin), Semaglutide (Ozempic, Wegovy, Rybelsus), and Tirzepatide (Mounjaro, Zepbound) to reduce obesity and thus, reduce risk of multiple myeloma progession? Or, do you know of any Trials looking at GLP-1's and MGUS, SMM or MM?