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A MyMyelomaTeam Member asked a question 💭
Boston (Milton), MA

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)

October 13
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A MyMyelomaTeam Member

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...

Find a Multiple Myeloma Clinical Trial | Clinical Trial Finder Tool
Find a Multiple Myeloma Clinical Trial | Clinical Trial Finder Tool
https://sparkcures.com/clinical-trials/multiple-myeloma
October 16
A MyMyelomaTeam Member

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.

October 14
A MyMyelomaTeam Member

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🌹

The MMRF | Multiple Myeloma Research Foundation
The MMRF | Multiple Myeloma Research Foundation
October 13 (edited)
MyMyelomaTeam

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

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 daratumumab-based trial mentioned sounds promising. Daratumumab (Dara) is an anti-CD38 antibody already well-established in myeloma treatment. Pairing it with a bispecific antibody is an active area of research for HR-SMM. To explore all current options, checking clinicaltrials.gov directly and filtering by "smoldering myeloma" is highly recommended. Your specialist can also help identify trials suited to your specific profile. Regarding CRAB symptoms, there's no fixed timeline — it varies significantly from person to person. Key things being monitored in your case would include:

- Rising free light chain levels (your lambda going from 330 to 530 over 4 years is being tracked for this reason)
- Kappa/lambda ratio changes in blood tests
- Bone marrow plasma cell percentage
- MRI findings showing any new bone lesions

Because free light chains have a short lifespan in the body, they're actually a very responsive marker — meaning your care team can detect changes relatively quickly and act before major symptoms develop.

The most important thing with HR-SMM is staying closely monitored. Given your rising lambda levels, your team is right to be proactive. Being asymptomatic and fit at 67 puts you in a strong position going into any treatment or trial.

October 13
A MyMyelomaTeam Member

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).

October 20

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