My doctor called yesterday and confirmed my PET from last week shows definite transformation and the PA called today to say it’s likely Richter’s (forgot to ask if confirmed by the biopsy - still shock) and they want to start treatment this week. I’m headed back to Houston for consult and planning. Meeting with the transplant team, too.
Options so far appear to be RChop or some version, or Nivolumab with Ibrutinib to prep for an allogenic transplant, or possibly a Cart T transplant (still in trails) at MDA.
Are there other options to consider?
Can’t deny I’m worried about: prognosis, missing work, taking care of my elderly mom, holidays with my family and how do I explain this all to family, clients, people at work and friends. Most have no idea I’ve had CLL for 18 years. My best guess is to just jump in and deal with it. Advice appreciated.
Thanks!
Written by
SarasotaPaul
To view profiles and participate in discussions please or .
I'm sorry about your news. The only thing I can say is "likely Richter's" doesn't seem very certain. Something transformed but into what? That will tell your possible further treatment options than the ones you already are considering (for Richter's).
edit : I saw your previous post that you possibly could have transformed to prolymphocytic leukemia - PLL - (if it's not Richter's) in which case you might try venetoclax plus ( rituximab or obinutuzumab)
I'm so sorry you are having to deal with this. Although I don't have any suggestions for other options for you (certainly doesn't mean there aren't any - I just don't know of any), often the other stuff has a way of working out.
I don't know your circumstances, but I can tell you that often reaching out to others for support can be greatly beneficial. It always helps to have someone to talk things over with because to handle everything on your own can be overwhelming.
And of course, we are here for you as well. Hope you are able to get the answers you need and all the best in Houston.
So sorry to hear the news Paul. I don't have any treatment advice, but at least you are in good hands with MDA. Sharing the news with others is always difficult. Maybe will be easier after you have a bit more information - complete confirmation of Richter's and the treatment recommendation from MDA. Wishing you good luck!
I'm sorry to hear that our worries about Richter's have been confirmed by PET.
You now need to have a proper exision biopsy of one of your enlarged nodes so that the exact type of lymphoma can be determined, a FNA will not do the job quite as well. It may be either a Hodgkin's or non Hodgkin's type of lymphoma and the treatment depends on what type it is.
If your Dr is talking about RCHOP then he thinks that it's a Diffuse Large B Cell Non Hodgkin's Lymphoma but I would want to know if that is definite from the FNA biopsy.
Richter's is treatable and can be cured so hopefully, you'll be back to your normal life at the end of the chemotherapy. RCHOP is quite tough but almost everyone comes through it really well and you are at a great hospital.
If you don't want to, then you don't need to tell anyone about your previous 18 years of CLL, just let them know about this new lymphoma and your treatment. I'm sure your lovely friends will be with you and supportive all the way.
Paul, here is a link to CLLSociety.org, where you will find extensive resources about all things CLL. On this front page, see the tab for Dr. Brian Koffman's blog. He is a member of this forum and founder of CLL Society. He's also been through the CAR-T process and has a separate blog section dedicated to that info.
Dr Brian Koffman successfully had one in April 2018 and is not the only member to do so. See his posts for more information healthunlocked.com/user/bko...
My doctor today confirmed Richter’s. Friday I meet with the transplant team. Interesting recommendation for conditioning pre transplant is the CAR NK. I’m leaning towards the Nivolumab/Imbrutnib for conditioning. Lots to digest.
Brian’s transplant wasn’t successful. I first met him at his 100th day party after it, which was before he knew that it didn’t work. Perhaps the conditioning bought him the time needed to get into the Ibrutinib trial. And that put his CLL on hold for several years before he decided on CAR T. He’s still here and has more energy than I had in my 20’s. I know that he will be able to give you some help getting up to speed quickly. bkoffman
I also have friends who have either done RCHOP or a transplant successfully when they transformed and are doing extremely well. There are lots of us here who are sending all kinds of positive thoughts!
Hello Paul: There is lots of information on the web about CAR NK and most of this research is happening at MD Anderson. The more I read about MD Anderson the more I am convinced that this institution is the best in the world for treating blood cancers such as CLL. I know you are down and concerned but have confidence in your MD Anderson professionals, you are incredibly fortunate to receive your care there. There are many of us pulling for you. I wish I could do more than offer words of encouragement. Good luck at your appointment on Friday.
I just hate to hear your news Paul. But I agree that MDA is the best in the world when it comes to blood cancers (as well as many others). Definitely go there and let them guide you. The forum here will be rooting for you so keep us updated. Best wishes for you to beat this. Paula
Paul, I just wanted to say that I hate hearing that you are having to deal with this but do know you are in one of the best places possible for treatment. I myself go to MDA has well as family and friends. Top Notch. Please keep us informed of your progress. STAY STRONG JR.
Paul, So Sorry you are having to go through this. You will get amazing support from your friends and family when the time comes to share the news. It’s wonderful that you are a patient at M. D. Anderson, no place better. Prayers for you to prevail against Richters as you have for the last 18 years against CLL. Brassy
I saw saw Dr. Koffman’s recent interview of Matthew David’s, MD of Dana Farber in Boston regarding new approaches to treating Richter’s that is showing promise at their institution. See the link below. It may be something to discuss with your providers as you learn about your treatment options.
Wow, thanks for sharing. Just forwarded the link to my Dr asking what to expect to get into remission. It’s becoming obvious the conditioning phase could be the most important decision here.
Paul, so sorry you are having to deal with this and all the other disruptions to normal life that come from it.
Nothing we would ever have chosen, and yet there will be deep and everlasting gifts inside it nevertheless. Life and those we love revealed in all their irreplaceable preciousness, though we might have chosen to see by a less complicated sort of light....
Just wanted to wish you all the best as you determine your path. You are in the very best hands at MDA. And you are so much stronger than you even yet know.
You can do this, and we're all right beside you, sending so much love and hope!
Sincerest prayers for you and your own ones as you go forward,
My wife and I meet with Dr Sphall in the transplant department at MDA today and left feeling her and Dr Wierda can conquer my Richter’s. Sort of a “shock and awe” approach with a combo Vivolumab/Ibrutinib, CAR NK, and stem cell transplant - a 1,2,3 slug fest. The fun starts tomorrow with my first treatment. Things are progressing quickly so looking forward to getting this started.
I still feel great, so surreal to know Richter’s has “significantly” invaded my body - my PET scan looks like a Christmas tree.
I’m very thankful to have good insurance and to have the resources to be here at MDA with their expertise and cancer killing tools and options.
I’m doing the Opdivo with Ibrutinib instead of R-Chop. It’s been a clinical trail at MDA, but think it’s open now. R-Chop is the backup plan if this doesn’t work, but what I’m doing has less side effects so I can continue working for now. Results have shown to be about the same.
I do have disability insurance, but it only covers 33% of my income. I’m the primary earner in the family with kids in college and sadly with too many expenses. Plus, I love, love what I do for work, so the thought of taking time off has been difficult to comprehend.
Uffff that was difficult. I guess you have to be physically exhausted. I do not work and could not work as much as I wanted. Finish exhausted after so many treatments.
I have 4 treatments over 8 weeks and then comes the CAR NK, or if I’m in remission, I’ll go straight into the Stem cell transplant. I’ll need to take off 30 days for the CAR NK and 100 days minimum for the SCT. I’m not looking forward to it, but know this is my best chance to beat this monster. Happy to hear you’re in remission. I need some good news.
Prissa, I’ve had to edit out your private contact details above as it’s not safe to make them known publicly especially on an unlocked post (meaning it can be found by google).
Please send SarasotaPaul a pm with those details and this will be private between you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
