Richter Transformation treatments

I was diagnosed with Richter Transformation of CLL last April and was fearing the worst. I had several different chemotherapy types, each with two or three cycles, but a biopsy in October of one of the growths in my abdomen showed that the Richter transformation had gone. The CLL remains, however.

I don't know which treatment or combination did the trick. I just know that I had two cycles of mini-LEAM, one of IVE and two of gemcitabine/dextamethasone/cisplatin. Has anyone else got rid of it with any of these? My consultant said he had not come across anyone before who had been successful with these treatments for Richter ttransformation. I'm just curious about whether my experience is genuinely unusual or whether others have had success via these or other treatments.

- Christian

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Fantastic. Very happy for you

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Christian, I am going through Richters Transformation treatments now. After the 4th session of Rchop chemo pet scan still shows no change in the abdomen, however, there are signed of something in the liver. Tomorrow I do needle biopsy of the liver. If in fact it's thd lymphoma there telling me that's serious but mentioned the other chemo drugs you mentioned. Also a few clinical trials that might work. I'm grasping for straws and hoping and praying for the best but preparing for the worst... Has anyone else had Richters with liver in the treatment?

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Hi Christian, so pleased for you, hope you won't mind me including a short line for Wchdale.

Wchdale, just wanted to wish you well as I'm sure our whole community does. Others here who have come through Richter's will hopefully share their stories too.

Best wishes to you both

Bubnjay1

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I'll second all those sentiments Bub. Very best wishes and such reassuring news from newyork.

Newdawn

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Hello Wchdale - I hope your biopsy gives you an encouraging result. You must be under a lot of strain on Rchop, but there are other things to try if it doesn't work. Hopefully other posters will come online and say what worked for them. My thoughts are with you.

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Thanks very much I appreciate it.

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Christian who is your consultant? Someone who is a 3rd party helping you with decisions or? Thank you

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The consultant who told me the news about the Richter Transformation was Dr Dima El-Sharkawi from University College London. She wasn't involved in choosing the treatment though: I had contact with her for a couple of months while on a trial for the drug TAK- 659.

I've just seen my usual consultant this afternoon, Professor Amrit Nathwani. Unfortunately he was a bit more circumspect. He said it seems the Richter has gone but he feels this may not necessarily be the case, because the biopsy needle only takes a sample from a very small area, which could have been a non-Richter bit. I don't really know what to think now but I'm having another scan and a biopsy over the next few months so hopefully things will become clearer.

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Thank you for the info. Yes I went through 4 including s cat scan, then needle, then core, then surgical... Was no fun at all. Wish you well. Where do you live?

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That sounds really tough, Wchdale. Good luck with everything.

I'm in London.

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I had liver, kidneys, bones involvement , it was all over my body .

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I had allo bone marrow transplant for Richters. Both are gone for now :)

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That's great. My CLL level of disease/activity has been too high to have a transplant, so I'm hoping it'll come down now I've started ibrutinib.

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I had ibrutinib for 5 months and then allo SCT :) good look

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Ausrine, did you have the stem cell transplant where they harvest your own stem cells or did you get bone marrow transplant from a doner? Congradulations on the outcome!

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Donor :) 10/10

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That's great to know - thanks!

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Hi Christian...great news... sounds like you had Hodgkin's Richter's as opposed to the more common DLBCL?

I had RCHOP and Etoposide and HDMP about 5 years ago, which is considered a cure in lymphoma... touch wood.

Wchdale, I hope you are able to get access to a clinical trial for Richter's only patients, most are running in the U.S., but I believe there is a Keytruda/ibrutinib trial in Europe or the U.K.

Early reports from the Mayo and OSU have been most encouraging...

~chris

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Hi Cllcanada - thanks for that, I'll suggest it to my consultant next time. I'm really pleased you've been free of it for so long.

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Thanks Chris, yes I have been long up the options and want to stay on top of the latest and hope I never need it. Where in Canada are you? I'm from Kanora Ont...

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Currently in Ottawa by way of Vancouver... You are in Kenora? Will they send you south or to Winnipeg for an HSCT?

~chris

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I was born there, havnt been back much, live in SoCal, so I'm going to USC Medical center. My Aunt works at Cancer center in Toronto so I'm in touch with her about every more. Seems like about the same treatment in both countries? Thank you

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Ok! got ya... there are no Richter's trials in Canada, not enough of us to warrant one... in the U.S. the Mayo and MDA, OSU, are running RT trials...

If I were you I would be seeing Dr. Kipps team in San Diego... Moores CC

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CLL-friendliest province is BC, I assume?

we are in Quebec, Montreal, Jewish General Hospital

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Ontario was ahead on new drug approval/funding, but I think BC has caught up...

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