Richter's in untreated patients

[Guest guest]

I was so sorry and dismayed to read of a member's husband

who had a transformation suddenly, while asymptomatic and

untreated for six years.

Thankfully, he is doing well post-treatment for Richter's.

It made me wonder if there are any percentages (or the

experiences of the doctors on the list) of how often

transformations occur in untreated CLLers?

Also, I'd love to hear from any other list members who

transformed before any treatment.

This isn't an experience I have read too much about.

Heléne

[Guest guest]

Richter can certainly occur in untreated patients but it is

much commoner in those who have been treated, either because

of the treatment or because treated patients have more

severe disease. But patients with the V4-39 IGHV gene tend

not to be particularly progressive yet have a high rate of

transformation to Richter.

Terry Hamblin MD

Heléne wrote:

/message/15531

[Guest guest]

Helene, In addition to my husband experiencing a RT in 2009,

there are 3 other CLLers we have maintained contact with who

had similar experiences. All four were previously untreated

for their CLL. All four had transformed disease isolated to

a single node/area or in the case of my husband, the spleen.

All four were treated with R-CHOP or CHOP. The individual

who received CHOP also had follow-up radiation. With the

exception of one who we haven't heard from since the spring,

all were in remissions lasting anywhere from 1-8 years

without needing new treatment for either CLL or DLBCL.

It has been suggested to us by various doctors that there

may be two lines of RT in CLL patients. CLL appears to be

familial in my husband's maternal side of the family, but

each of the four relatives are presenting differently. My

husband is the only one who has had a RT.

Stella

[Guest guest]

My husband (63) was diagnosed one year ago with CCL that was

Richter's at the time of diagnosis. He had not had any

previous treatment. His doctor told us my husband had CLL

for years but was not diagnosed by our family doctor. We

knew there was something wrong with him but no one picked up

on it. All of a sudden last Spring his lymph nodes all over

his body grew huge and he had very bad fatigue, lost weight,

could not eat, had pain in back and hips due to enlarged

nodes.

To make a long story short he started BR (Bendamustine and

Rituxan) in September. He had six rounds and finished in

February. He had a very good response to the treatment. We

were told this month that they consider him to be in

remission, though he is having some kidney function problem

that is being checked out as I write this. We pray for a

long remission. That is our story so far.

Marcia