Your Feed

Filter by
See content from
Back to the latest
Avatar
kwm69
Multiple Myeloma Discussion • April 25, 2025
Discussing Discontinuing Dex for Maintenance
AI-generated title
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.
Avatar
blueQuetzal
Multiple Myeloma Discussion • April 24, 2025
Working During CAR-T: What to Expect?
AI-generated title
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.
Avatar
Debbie
Multiple Myeloma Discussion • April 24, 2025
Managing Darzalex Neuropathy Pain - Tips?
AI-generated title
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.
Avatar
jadeHedgehog
Multiple Myeloma Discussion • April 24, 2025
Experiencing Secondary MDS After MM Treatment?
AI-generated title
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.
Avatar
Qunbin
Multiple Myeloma Discussion • April 23, 2025
Connect In Person: Philly & Portland Meetings
AI-generated title
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
Avatar
Blanez57
Multiple Myeloma Discussion • April 23, 2025
Sharing My Teclistamab Remission Story
AI-generated title
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.