Searching the internet for some glimmer of hope as Mary Jo's nephew, Billy, begins his battle with Richter's Transformation. I found a message on a CLL support group website and an article from New York that give me hope that Billy can beat this nasty turn that his cancer has taken:
Hello. I am new to this group. My dad just finished his first round of R-CHOP chemo for Richter's Transformation. His CLL transformed to an aggressive high grade large B-cell lymphoma. I am looking for others that have gone through or are going through this treatment. He had 4 rounds of chemo 3 years ago to treat his CLL. The CLL is now completely gone - but has transformed into this rare but horrible cancer. Any information positive or negative is welcome. Thank you. HS
Hello Heather, Sorry to hear about your Dad, but as others have already stated, a Richter's Transformation is not necessarily as grim as the internet statistics would lead you to believe. My husband was diagnosed in 2003 at age 49 with atypical CLL. His wbc was steadily rising, although he was completely asymptomatic, and therefore did not require treatment. All that changed in May of 2009 when he became abruptly and acutely ill with a Richter's Transformation that manifested in his now incredibly enlarged spleen. He was at the local ER on a Sunday for a CT scan and blood work that revealed very elevated LDH levels as well as multiple suspicious lesions on his spleen. His wbc actually dropped from 85,000 to 60,000. Monday his oncologist ordered a PET scan that "lit up" and by Wednesday he started R-CHOP. Improvement was observed by his second treatment which was given every two weeks for six cycles. He handled it better than we expected with constipation and hiccups being his major complaint. His doctor ordered a variety of prophylactic medications which did their job to keep him comfortable and able to work initially full time, and then part-time. He continued to take an antiviral and an antibiotic prophylactically for 6 months post treatment. Two weeks post treatment, with the oncologist's permission, we were able to vacation in Nova Scotia. As his doctor likes to say, " Richter's Transformations are not all created equally." R-CHOP is very effective at potentially curing DLBCL (RT) My husband continues to enjoy remission for both the RT, as well as his CLL. All his blood counts are completely within the normal range and he enjoys a very good quality of life. At almost four years, we are hopeful that the RT will not return. However, we also know that the CLL is lurking and will eventually resurface. Until then, we enjoy our lives! We have maintained contact with others who have traveled the Richter's Road and continue to do well. Please feel free to contact us if you have any questions. Have hope...the statistics do not tell the whole story. Stella & Peter
And then I found this story from WABC in New York about a chef in New Jersey who has had five cancers, including Richter's Syndrome.
NEW YORK (WABC) -- To hear a diagnosis of cancer is usually an extremely difficult undertaking, but hearing it five different times is unimaginable to most of us.
Eric Levine, 41, says the fifth time changed his life dramatically.
For seven years, he was free from cancer until this year.
"I've had cancer five times. I've had chondrosarcoma, Hodgkins AML, leukemia twice, and then Richter's Syndrome, which is an advanced form of chronic lymphocytic leukemia," Levine said.
But instead of stopping the professional chef, the diagnosis has made him go for life at a faster pace and in a different way.
He took a new job as the chef at the Montammy Golf Club in Alpine, New Jersey. And he brought out a new cookbook.
He competed in a nationwide Food Network cooking series called Chopped, sometimes taping shows right after his chemotherapy treatment.
"I'm in remission. We're in the fourth week right now of remission, so it's a great thing and I couldn't be happier place in life as far as work," he said.
It's work where he pours out his passion for food and now also for good health.
Vegetable drinks, not normally a golf club staple, are now included in Montammy's menu.
But more has changed for chef Eric - his attitude about life. He's says he's now learned what really matters.
"I learned that I could do so much better, and so much more for people than I have been. And that does a lot for me," he said.
Already he's begun doing for others. This year he was honored in the American Cancer Society's Taste of Hope event.
"It used to be all about me, but now it's, you know - it's about others. It's an interesting life, an interesting life. If I can do great things, to inspire others, that's what I want to do," Levine said.
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