Testing for Richter's?

[Janeerp]

Hi

I have been on active monitoring for 4 years and have been told I am probably approaching treatment. I have a biopsy on Monday to check if it has become aggressive - is that usual? I couldn't see anything in the Treatment section of the website.

Thanks

Jane

[Newdawn Administrator]

Hi Jane,

I’ve just had a similar battery of tests for possible transformation to a more aggressive blood cancer but my situation is different in that I’ve just slipped out of remission following treatment in 2019. Thankfully my biopsy and scans led to a result of continued CLL profile but probably with a more active form and with more of a SLL presentation. Scary time however!

It’s not customary to test for RT especially from the W&W stage but it could be your doctor is very vigilant and/or you have other symptoms that may have prompted further investigation. He may have found your LDH level raised for example (mine was but it’s not conclusive and this can also happen when treatment is needed). I notice you’ve been suffering from lymphadenopathy and severe night sweats too. It sounds like you may be in need of treatment at this stage anyway.

The biopsy sounds worse than it is and if it hasn’t been suggested, you may also be sent for a PET scan. I hope all goes well and that you can be started on treatment to alleviate these distressing symptoms. Much of what you’ve been suffering are consistent with standard CLL treatment need so avoid googling Richters because there’s no certainty at all at this stage.

Please let us know how things go.

Best wishes,

Newdawn

[Janeerp in reply to Newdawn]

Thanks Newdawn, that's so helpful. I have had a PET scan and they compared it to one I had two years ago and I have more and bigger nodes plus a larger spleen. I try hard to put it out of my mind between the appointments, but I'm sure you know that's harder than it sounds sometimes!

Thanks again and will let you know

Jane

[Janeerp in reply to Newdawn]

Hi Newdawn

I haven't forgotten to let you know.....I think they have forgotten to let me know 🙄. After quite some chasing I have a telephone appointment next week for the results of the biopsy nearly two months later.

Hope you are keeping well

Janeerp

[Newdawn Administrator in reply to Janeerp]

Hope all goes well with your results Janeerp.

Regards,

Newdawn

[Janeerp]

Thanks Newdawn Finally got a call to day to say that it hasn't become aggressive but I will be starting treatment. I am grateful for your support and knowing you and so many have had treatment successfully is so helpful going forward. 🧡