Richter's syndrome, explained.
If you or someone you love has CLL and has heard the words "Richter's transformation," this guide covers what it is, the signs doctors watch for, and the questions worth bringing to your care team.
This guide is general information written by a family that has been through it. It is not medical advice. Always talk with your own oncologist about your care.
When slow-growing CLL becomes an aggressive lymphoma
Chronic lymphocytic leukemia (CLL) usually grows slowly, and many people live with it for years. In a small share of patients, the disease transforms into a fast-growing lymphoma. That change is called Richter's syndrome, or Richter's transformation.
Most often it becomes diffuse large B-cell lymphoma (DLBCL). Less often it becomes Hodgkin lymphoma. Because it behaves so differently from CLL, it needs different treatment.
of people with CLL develop Richter's syndrome
is how it's confirmed, often guided by a PET scan to find the most active area
Changes worth calling your care team about
Fast-growing lymph nodes
A node, often in one area, that grows quickly over weeks rather than months.
New "B symptoms"
Fevers without an infection, drenching night sweats, or weight loss you can't explain.
Lab changes
A sharp rise in LDH, or blood counts that change faster than your CLL usually does.
These signs can have other causes too. The point is not to panic, but to raise them early.
Bring these to your next appointment
Print this list or save it to your phone.
- Do my symptoms or labs suggest Richter's transformation?
- Should I have a PET scan or a biopsy, and where?
- If it is Richter's, is it related to my CLL (clonally related)? How does that change my options?
- Am I eligible for a clinical trial?
- Should I get a second opinion at a center that sees many Richter's patients?
- What should make me call you between visits?
Where to find help
Leukemia & Lymphoma Society
Free information specialists, support groups and financial help for blood cancer patients.
lls.org →CLL Society
Patient-focused education, support groups and news on CLL and its complications.
cllsociety.org →ClinicalTrials.gov
Search for open Richter's syndrome trials. Bring what you find to your oncologist.
clinicaltrials.gov →What Is Richter's Syndrome? A plain-language overview
Our longer article goes deeper on how Richter's is diagnosed and treated, and where research stands.
Facing this now?
We're a family that has been where you are. If it would help to talk, reach out.
Contact us →