Richter Transformation treatments

[Christian057]

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

[newyork8]

Fantastic. Very happy for you

[Wchdale]

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?

[Bubnojay in reply to Wchdale]

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

[Newdawn Administrator in reply to Bubnojay]

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

Newdawn

[Christian057 in reply to Wchdale]

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.

[Wchdale in reply to Christian057]

Thanks very much I appreciate it.

[Wchdale in reply to Christian057]

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

[Christian057 in reply to Wchdale]

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.

[Wchdale in reply to Christian057]

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?

[Christian057 in reply to Wchdale]

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

I'm in London.

[Ausrine in reply to Wchdale]

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

[Ausrine]

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

[Christian057 in reply to Ausrine]

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.

[Ausrine in reply to Christian057]

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

[Wchdale in reply to Ausrine]

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!

[Ausrine in reply to Wchdale]

Donor 10/10

[Christian057]

That's great to know - thanks!

[Cllcanada Top Poster CURE Hero]

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

[Christian057 in reply to Cllcanada]

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.

[Wchdale in reply to Cllcanada]

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...

[Cllcanada Top Poster CURE Hero in reply to Wchdale]

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

~chris

[Wchdale in reply to Cllcanada]

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

[Cllcanada Top Poster CURE Hero in reply to Wchdale]

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

[Hidden in reply to Cllcanada]

CLL-friendliest province is BC, I assume?

we are in Quebec, Montreal, Jewish General Hospital

[Cllcanada Top Poster CURE Hero in reply to Hidden]

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

[Southernsista in reply to Cllcanada]

My husband has just been diagnosed with richters

He has had cell for several years

Dr said this is much more aggressive

Can you tell me what your treatment was and did it work ?

[Cllcanada Top Poster CURE Hero in reply to Southernsista]

I just answered you other posting...