I have lambda at 530 (330 4 years ago) light chain HRSMM. Currently only trial available is with Dara and another biospecific. How quickly does symptoms occur (CRAP)? just diagnosed Aug 2026.
Thank you lili (age 67, very active/athlete, asymptomatic)
I found the best answer to that wasn’t through my local oncologist but through my Dana Farber oncologist as they were tied into several clinical trials. But as @A MyMyelomaTeam Member said, MMRF is a good place to start. Here - https://themmrf.org/diagnosis-and-treatment/cli.... Their Patient Navigators to help guide patients through their trial options.
Also SparkCures is a specialized platform that helps myeloma patients identify, understand, and connect with clinical trial options based on their specific disease status and treatment history. Here- https://sparkcures.com/clinical-trials/multiple...
Hi Lia, I was diagnosed in March '24 with stage 3 Lambda light chains MM. I turned down the SCT because I too was very active and asymptomatic. After the 4 drug induction cocktail for 4 months I went to maintenance with Revlimid & Darzalex faspro until my 2nd year. At that point I did a BMB, a ClonoSEQ test & a PET scan. I was mrd negative-6 with no issues in the scan and got off all medications, now for 4 months. The entire time asymptomatic tolerating treatments well with no side effects. Blood tests have been changed to every 3 months. Good luck with your journey.
Lili,
The most important thing is to protect your kidneys. A MM Specialist is key, combined with a Nephrologist. While you are still feeling good, build your team. The Multiple Myeloma Research Foundation has a list of MM Specialists. Unfortunately, I went to Oncologists who did not specialize, and they didn’t even know I was high risk. The MMRF also have people you can talk to, and I’m sure a list of Clinical Trials. I have added you to my team. You are welcome to add me to yours. HTTPS://www.themmrf.org
Paula🌹
What clinical trials are available for high-risk smoldering myeloma (HR-SMM) with lambda light chain involvement, and how quickly might CRAB symptoms appear?
First, being active and asymptomatic at diagnosis is genuinely a great starting point — your body is clearly doing something right!
Regarding trials, the Show Full Answer
There is a clinical trial now at Jefferson healthcare in Philadelphia PA for Smoldering myeloma. Dr. Adam Binder is the person to contact. Phone (Phone number can only be seen by the question and answer creators).