Richter's Syndrome: Is anyone else dealing with this disease?

Posted by donnarichterssyndrome @donnarichterssyndrome, Feb 24, 2022

I have recently been diagnosed with Richter's Syndrome- my CLL/SLL which I have had since 2008 has now undergone a "transformation" to Richter's; which is Large Diffuse B Cell Lymphoma, however because of the transformation, it is even harder to deal with. Right now I am going thru R-CHOP (first treatment last week) to hopefully put things in remission. I will need a transplant in order to go into remission. I am working with my Oncologist as well as Moffitt Cancer Research Hospital, who can hopefully help me. What I have is extremely rare. Only 2-8% of CLL (Chronic Lymphocytic Leukemia) patients develop this disease. There really aren't even studies out there; hardly. Is anyone else dealing with this disease?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

csematones | @csematones | Jan 24 12:30pm

His was diagnosed through biopsy which I believe is the only way to definitively know. They were pretty sure however that confirmed it.

Colleen Young, Connect Director | @colleenyoung | Feb 5 4:16pm

In reply to @mrsg263 "Hello. Are you able to tell me if the Richters was confirmed via biopsy only or..." + (show)

@mrsg263, I hope you saw the helpful post from @csematones.

Mrsg, have you been diagnosed with Richter's syndrome or is that a possibility being investigated? How are you doing?

kcjohnson1978 | @kcjohnson1978 | Apr 17 11:09am

Hello my husband was diagnosed with CLL in 2022, he was diagnosed with DLBCL/Richter's in March. Had his first RCHOP treatment April 17th, Was really sick a few days after, but after a couple in the hospital things started going well. We went to another Oncologist/hematologist at Wake Forest Baptist Health right before 1st treatment for consultation. It sounds like he's headed in same direction as you are. He's having 2nd treatment today. After 3 treatment we go back to WFBH for a meeting with bone marrow/stem cell medical team. That's about all I can tell you for now. I pray everything goes well for you and would love to hear learn from your journey. I don't know anyone that has had happen to before. 🙏💚🧡

Lori, Volunteer Mentor | @loribmt | Apr 18 9:36am

In reply to @kcjohnson1978 "Hello my husband was diagnosed with CLL in 2022, he was diagnosed with DLBCL/Richter's in March...." + (show)

Welcome, @kcjohnson1978. Thank you for sharing your husband’s journey with CLL, DLBCL/Richter’s Syndrome. It sounds as though he’s following a similar path as @csematones husband in requiring a bone marrow transplant.
I’m here to offer a lifeline, along with many of our members who have also had bone marrow transplants for various blood cancers. The transplant has been a real life savor and an opportunity for a 2nd chance at life. So I hope you’ll continue to give us updates and when the time comes for transplant, please know that you and your husband won’t going through this alone. We have your back. ☺️
How is your husband feeling after his first treatment cycle yesterday?

kcjohnson1978 | @kcjohnson1978 | Apr 19 8:56am

In reply to @loribmt "Welcome, @kcjohnson1978. Thank you for sharing your husband’s journey with CLL, DLBCL/Richter’s Syndrome. It sounds as..." + (show)

Thursday was his 2nd cycle, so far he's really good, the first one was really tough. Just praying he stays good this time. He was having a lot of pain first time so that may have been what caused all the vomiting. His oncologist gave him a different nausea med for this treatment so hopefully that will keep him from being so sick. Thank you for reaching out. It's good to hear some good things out there, because everything I read is devastating. That's why I looked for a support group, I'm trying to stop researching everything.

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