CLL transferred to Richter's Syndrome

[Ooshi]

Morning, we found out yesterday that my husband's CLL has transferred to Richter's Syndrome. He is having a lymph node biopsy and blood transfusion next week and starts chemo on Feb 28th. I've visited the Lymphoma Australia website, and the prognosis doesn't look good. Can anyone who has been through this please let me know how you're going and what's working for you. God bless

[BigfootT]

Ooshi, I'm very sorry to hear this and I'll preface by saying I'm no expert and others will weigh in with far more experience and details, but I know the two question you need to ask,

Is it DLBCL Richters or Hodgkins Lymphoma Richters? There are some others, but they are extremely rare.

Is it clonally related to the CLL or de novo. De novo means it's more likely treated like "normal" DLBCL / HL. Perhaps this is the reason for the biopsy you mention.

I hope you get some good answers here and wish you and your husband all the very best. Bigfoot

[Ooshi in reply to BigfootT]

Thank you for your reply much appreciated

[DriedSeaweed]

What BigfootT mentioned is quite important to find out.

If I were in your shoes I would be asking about Epcoritamab. There are a few locations in Australia recruiting for Richter’s: clinicaltrials.gov/study/NC...

If clonally related it can be difficult to treat. Epcoritamab has been showing promise so I would be pulling all the levers to find out fast if this is possible. Unfortunately, unlike CLL you don’t have the luxury of time so I hope you can get a definitive response from one of the trial locations.

Don’t be timid about this. It is something worth pushing hard to find out very soon.

Also, if there is a chance you would have to travel in the long run you would be happier you inconvenienced yourself and took the chance.

Hopefully, the other Australians will chime in soon…

[Ooshi in reply to DriedSeaweed]

Thanks for the advice. ATM they are looking at Non-Hodgkin the biopsy may change that.

[BigfootT in reply to Ooshi]

I'll just add I don't think he has Richters until the biopsy pathology confirms Richters. Perhaps it's something else.

[CLLerinOz Administrator]

Hello Ooshi

I'm really sorry you and your husband are dealing with the possibility of a Richter's diagnosis. Much of what you read online about it might already be outdated and, while none of us wishes to receive that diagnosis, there is progress being made with some much more encouraging outcomes.

As well as the excellent replies you've already received, like DriedSeaweed , I'm also wondering where in Australia you're located and how easy it is for you to access a research centre that deals with Richter's on a somewhat more regular basis (or perhaps, if that's not already the case for you, your medical team may already be liaising with one).

From your profile, it appears that your husband has not had any previous treatment for his CLL. I'm not sure how accurate that is but that's something his medical team would be considering when deciding on what treatment will be most suitable for him should Richter's be confirmed.

The Lymphoma Australia information about Richter's that you've read has a section about treatment options that also encourages consideration of a clinical trial. They also provide a helpline with a Lymphoma Care Nurse available to support you. ( lymphoma.org.au/types-of-ly... ). Leukaemia Australia also has some helpful information and support services: leukaemia.org.au/blood-canc...

While you're waiting for more information from the lymph node biopsy, here are some previous posts, including some encouraging reports, on the topic of Richter's that might be helpful: healthunlocked.com/cllsuppo...

All the best

CLLerinOz

[Ooshi in reply to CLLerinOz]

Thank you so much for the information, this is really daunting. We're in Adelaide and receiving really good care through Flinder's Hospital.

[CLLerinOz Administrator in reply to Ooshi]

You’re in good hands there so take some comfort from that.

All the best for the next couple of weeks as you find out more. We’ll be here if you need us.

CLLerinOz

[AussieNeil Partner Administrator in reply to Ooshi]

Flinder's is where Adelaide's CLL research expertise is most located, but do check what clinical trial access you can access elsewhere, such as Melbourne, which has stronger direct links with overseas CLL researchers.

Neil

[Jm954 Administrator]

The treatment of Richter's is not easy but Richter's is curable. There will be difficult times but please hold onto that hope.

There is a Facebook group called Richter's Transformation and only recently there was a post from a member who had been in remission for 9 years post Richter's following chemo and then a transplant which is before the new novel treatments that are improving remission rates.

I hope everything goes smoothly, please keep us updated, we will be thinking of you both

Jackie

[newyork917]

Ooshi,

I am so sorry to hear about your husband. If they are doing the lymph node biopsy, how did they confirm it transformed to Richter's? Did your husband have a high SUV on a PET scan? If it is suspected Richter's, without confirmation from a biopsy, it may be accelerated CLL. As others have suggested, pushing hard to get the answers and the right treatment plan is critical. Time is of the essence. Sending thoughts and prayers to your family.

[Ooshi in reply to newyork917]

Thank you so much for the support and advice. Yes, he had high SUV on the PET scan, he had the biopsy today.