Treatment for Richter Syndrome: Hi What... - CLL Support

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Treatment for Richter Syndrome

Priss69 profile image
20 Replies

Hi

What treatment are they receiving for Richter syndrome?

I have only been given the R-CHOP.

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Priss69 profile image
Priss69
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20 Replies
kitschman profile image
kitschman

First R-CHOP and then possibly a hematopoietic stem cell transplant. Specifically, an allogeneic stem cell transplant if the patient is deemed fit enough or an autologous stem cell transplant if not. Some patients are elderly and not fit enough for either one, so clinical trials might be considered.

Priss69 profile image
Priss69 in reply tokitschman

I think in my case they would not do the transplant. I have heart problems. I only received the R-CHOP

Hoffy profile image
Hoffy

CLL Society has discuss some new richters trials that have done well.

CLLSociety.org

I hope all goes well,

Hoffy

Priss69 profile image
Priss69 in reply toHoffy

Thank you very much

virdieblue profile image
virdieblue in reply toHoffy

And some of the news from ASH mention new treatments that have been effective.

Virginia

Priss69 profile image
Priss69 in reply tovirdieblue

Hoping that these treatments are effective for everyone.

CLLerinOz profile image
CLLerinOzAdministrator

I wrote a post recently about a trial combination that is being explored for Richter’s as well as for relapsed/refractory CLL. You can read the summary of the report that was delivered to the ASH2019 conference here although I’m not sure how relevant it is to you in your particular situation:

onclive.com/conference-cove...

Priss69 profile image
Priss69 in reply toCLLerinOz

14/5000

Thank you very much

bkoffman profile image
bkoffmanCLL CURE Hero

Consider a transplant if you are in a deep remission. A few promising trials.

Priss69 profile image
Priss69 in reply tobkoffman

I had the R-CHOP but the transplant was not offered, because they say that would be in case of relapse.

bkoffman profile image
bkoffmanCLL CURE Hero

That is one approach. The other is to do the transplant while in remission to consolidate it. If you do relapse, it can be hard to get the RT controlled again for the transplant so that is why some docs are aggressive. Look at the ASCO abstract on RT and transplant I just posted on our website. But you may never relapse or do great with a second therapy or trial. No certain answers. RT trials are promising.

Priss69 profile image
Priss69 in reply tobkoffman

I pass my contact to you privately. I am trying together all the Ricthers in the same place where there are also participating hematologists and researchers. When they tell you Ricther, they are sitting you to death.

It is very scary and doctors are also afraid.

bigunwill2 profile image
bigunwill2

I have Richter’s large B-cell lymphoma—a mass in my colon. I had half my colon removed an then 2 1/2 weeks later started 6 cycles of R-EPOCH. At cycle 4 they have added 10 days Venetoclax. The first Venetoclax was a gradual blued up. This cycle I’m taking 400mg for 10 days with chemo. (5 days) after. I’m in hospital for 24 hour continuous infusion for 5 days.

The last 2 cycles I’ve had neutropenia fever and had to come back to hospital for antibiotics.

Priss69 profile image
Priss69 in reply tobigunwill2

Why didn't you get the RCHOP on the front line?

bigunwill2 profile image
bigunwill2 in reply toPriss69

My doctors thought the R-EPOCH best

Priss69 profile image
Priss69 in reply tobigunwill2

Two doctors from two different hospitals took me. Those of Toulouse where I live, they told me that with the R-Chop it was enough because they didn't find masses in my body. At the hospital where I was being treated for LLC, they told me to wear the R-EPOCH. In the end they treated me with the R-CHOP.

How are you now?

bigunwill2 profile image
bigunwill2 in reply toPriss69

Am in middle of 5 cycle. I am weak the week after when my numbers drop. The last 2 times I had neutropenia fever. The last time lasted longest, but I think that was from adding Venetoclax.

When my numbers return, I feel good. I’m hoping we timed this one right to feel good Christmas Day.

Priss69 profile image
Priss69 in reply tobigunwill2

Are doctors octimists about your treatment?

Smakwater profile image
Smakwater

I read the following due to the recent post by Sarasotapaul six days ago.

healio.com/hematology-oncol...

Addl support:

clinicaltrials.gov/ct2/show...

clinicaltrials.gov/ct2/show...

cancernetwork.com/leukemia-...

Sarasotapaul's Post :

healthunlocked.com/cllsuppo...?

Priss69 profile image
Priss69 in reply toSmakwater

Thank you so much for this information

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