Possible Richter's

My husband was dx in 2003 with atypical CLL. Although his wbc has been progressing steadily, he was asymptomatic and on W&W.

About a month ago, he developed severe pain in his upper left quadrant that sent us to the ER. The CT scan revealed an extremely enlarged spleen (19cm) with multiple lesions. His LDH levels were very elevated.

The onc. from Sloan-Kettering ordered a PET scan. Unfortunately his spleen was "lighting up" and therefore suggestive of a Richter's transformation. The onc. felt a biopsy to confirm Richter's was too dangerous given the size of the spleen and he wanted him to begin R-CHOP immediately.

My husband is 56, never treated for the CLL, and is now responding very well to the R-CHOP. His spleen is now almost normal in size and all other blood work is completely normal. The onc. wants another PET scan done two days before the 5th treatment and then discuss post treatment options.

I was wondering if anyone else has been treated for a Richter's transformation? Were you treated previously for your CLL prior to the transformation? What treatment did you receive for the Richter's? Was an autologous stem cell transplant recommended after the first remission or after relapse?

Thank you for any help offered.

Stella & Peter

On 6/29/2009 stillstanding wrote:

My husband was dx in 2003 with atypical CLL. Although his wbc has been progressing steadily, he was asymptomatic and on W&W.

About a month ago, he developed severe pain in his upper left quadrant that sent us to the ER. The CT scan revealed an extremely enlarged spleen (19cm) with multiple lesions. His LDH levels were very elevated.

The onc. from Sloan-Kettering ordered a PET scan. Unfortunately his spleen was "lighting up" and therefore suggestive of a Richter's transformation. The onc. felt a biopsy to confirm Richter's was too dangerous given the size of the spleen and he wanted him to begin R-CHOP immediately.

My husband is 56, never treated for the CLL, and is now responding very well to the R-CHOP. His spleen is now almost normal in size and all other blood work is completely normal. The onc. wants another PET scan done two days before the 5th treatment and then discuss post treatment options.

I was wondering if anyone else has been treated for a Richter's transformation? Were you treated previously for your CLL prior to the transformation? What treatment did you receive for the Richter's? Was an autologous stem cell transplant recommended after the first remission or after relapse?

Thank you for any help offered.

Stella & Peter

My husband was diagnosed with atypical cll four years ago, also had a very large spleen . we went from one treatment to another, we tried them all. they where even going to remove the spleen. in the mean time i was researching all natural and alternative treatments the trial drug he was on was not working ,they amost pulled him off the drug . it was the Dr that kept him on it. there where 8 weekly treatments and four monthly treatments.It was going on the fifth weekly treatment,and his levels went fron 252thousand the most they would go down is to 168 but only had a few weeks to go i ordered all i researched . He took all i ordered he went into remmision after six weeks its been two years and still on everything holistic . DOING GREAT . there are alot of books out there one is from ty bollenger cancer step out of the box , the other one is by Bill Henderson curing cancer gently . both are great we used alot of the treatments in the two books remmember cll medically will always come back . but when you keep the body in balance and all the cells are doing there job chances are it proubley won`t .All that said . research its worth it.