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

Hello @donnarichterssyndrome and welcome to Mayo Clinic Connect. I can understand your desire to connect with others who share this rare diagnosis. Those of us with rare cancers always feel alone in our situation. As I looked through the discussions, I don't see any others with this particular diagnosis, I am thinking that the transplant you are planning is a bone marrow transplant. Is that correct? Lori, @loribmt, has had a bone marrow transplant and she might be able to discuss her experiences with you.

Here is a discussion group of members who have had either bone marrow transplants or cell stem transplants, https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/. I would encourage you to read this discussion and click on reply to ask questions of any of the members.

Has you doctor suggested how many R-CHOP treatments will be necessary to go into remission?

Hi @donnarichterssyndrome I’m so sorry your CLL has decided to take things up a notch. Most often it is a slow ‘smoldering’ blood cancer on the lymphatic side of the blood. But in your case it has now developed into a faster growing lymphoma. So it’s important that your oncologist/hematologist has you in treatment. The R-CHOP is the standard treatment and should bring this to remission.

But I do understand the need for a Stem Cell transplant to help insure this doesn’t return. In a nutshell, at some point your immune system has stopped recognizing the cancerous cells as an invader and failed to wipe them out! So they’re allow to proliferate and take over.
Chemo should bring that under control but the mechanism that allowed for the failure in the first place can be in any cells that might be hiding out, evading cancer treatment. That’s where a bone marrow transplant comes into play.

I had AML which was brought to remission and required a transplant. I’m almost 3 years out! It’s been an amazing journey and well worth the effort. My transplant was analogous ~ I needed to have an unrelated donor to give me a stronger immune system. It’s my pleasure to help you any way I can if you have questions about the transplant procedure and journey along the way.

Though it’s something the transplant doctor would decide, has your oncologist mentioned whether you’d be able to use your own cells or need an unrelated donor?

I was diagnosed with CLL/SLL in 2014. No treatment till June of 2021. Very good response but diagnosed with Richter's in my tonsil in Oct/Nov of 2021. Started a regimen my oncologist suggested (not R-CHOP) earlier Nov and both CLL and Richter's went into remission in Jan of 2022. I had no side effects during and after the treatment except low WBC and ANC. I have been feeling great and it is a miracle. Since Richter's has high chance of relapse I have been closely monitored by oncologist and lab results (lab very two weeks first and now every four weeks). I'm still taking Revlimid (part of the regimen). Bone marrow transplant is probably not possible for me due to my age (just turned 77) so CAR-T is an option if relapse. I would like to share my experience with others with Richter's and support each other but hard to find other patients since it is a very rare and aggressive type of cancer.

@taichung0812, such a helpful and hopeful post. I wish a long and eduring remission. Should you ever have to consider CAR-T Therapy, please note that we have a support group dedicated to this treatment protocol. It's a treatment you or your caregiver may wish to lean on peer support. See here:
- CAR-T Cell Therapy support group for patients and caregivers https://connect.mayoclinic.org/group/car-t-cell-therapy/

My husband was diagnosed with CLL at the end of 2019, through his first trial he had node growth which was biopsied and found to be RT. Since then he has done rchop, car-t and most recently a stem cell transplant. His 100 day scans showed uptake in his tonsil so that was just biopsied a few days ago. Waiting on the results but we assume it's still RT. Hopefully his docs will have a plan for his next treatment and we will keep rolling along hoping to find something to push him into remission for a little while,

Welcome @csematones. I'm tagging @csematones @lorbmt and @taichung0812 to bring them into the discussion.

I know that the first 100 days are the toughest. Any update on the biopsy on his tonsil? How are YOU doing?

No results yet, tomorrow will be 14 days post biopsy so hopefully we will have results by then. We are hanging in. We thought after day 100 we could go back to more of a normal life again but it seems like that is not quite the case yet. We went in to Dana Farber last week and they said more than likely they will go back to the donor for more leukocytes and see if that helps. Other than fatigue and daily morning stomach issues though my husband is feeling pretty good overall so that's a plus!! I suppose we will, yet again, just wait and see where this road takes us next 🙂

Good morning, You and your husband have been on quite the medical journey for the past few years. I’m happy that @colleenyoung has brought me into the conversation. I’m more than willing to offer encouragement and help out in any way I can. My bmt was 3.7 years ago (feeling fabulous) but I remember every step of that trek through transplant land.

That 100 day mark felt so far away in the beginning. It was a magical number where we hoped everything would return to a predicable level. In the transplant world it does signal a point where, should there be any graft vs host issues that they would not be acute, developing out of control rapidly. After the 100 days, issues tend to creep up slower. But it’s still a huge milestone because generally the worst in our symptoms is over!

Right after my transplant for AML, my doctor told me there were extra cells from my donor set aside in a freezer should there be a need for them. Sometimes our new immune system needs a little nudge to give it more, umph. The goal of our new cells is to be able to recognize and respond to cancer cells where our old cells failed. It becomes tricky though because of the anti-rejection meds we’re on in the beginning. Our new cells are hyper aggressive so they need to be held in check for a while to avoid any Graft Vs Host Disease (GVHD), attacking our body…the ultimate rejection! Unfortunately that also impedes the new cells from having a Graft Vs Cancer effect on any reemerging cancer cells. So that’s where the infusion of extra cells from the donor will come into play. It gives the new immune system a power surge to help seal the deal.
Your husband’s doctors are hoping that this will do the trick for your husband and get him into a durable remission.

The fatigue can be a friend for a while and the tummy issue should eventually go away. Seeing a smiley face after your comment let’s me know you two are taking this journey in stride. My husband and I frequently reflect that anyone going through this needs to keep a positive attitude, a sense of humor and a helluva sense of adventure because we never quite know where this road is taking us. ☺️

I’d like to keep tagging along so let me know how the biopsy turns out, ok? Wish you husband well for me!

I too had CLL/SLL since 2013. Had Merkel cell
in 2017, had surgery, chemo and radiation. Then after all treatment for Merkel cell my CLL came out of watch and wait , I started on imbruvica , which kept me in remission for almost 3 years. Was put on venclexta for one year and 6 months on Rituxamab. Now this May I was taken off the venclexta per MD suggestion. I started having horrible sweats day and night, lost 35# and my spleen enlarged, so I was in great pain. It happened all within a 6 week period after stopping venclexta. So tests done and I had a Richter's Syndrome to large Diffuse B cell lymphoma like you. I just finished 2nd course of R-CHOP. I've done well except kidney numbers not good, having to worry about staying hydrated. Spleen is shrinking, pain gone, weight stable. My MD and I will be discussing next treatment options, next week (10 days after 2nd chemo treatment.) Possibly do more R-CHOP treatments or start a new generation of imbruvicia drug. Then when/ if i get in remission, a bone marrow transplant. It is becoming a long road but I'm only 65, have a lot to live for, so keep going on to the newest thing. I wish you well and feel free to ask any questions. I'm always happy to share my journey if it might help someone else.