Richters Transformation

[seoul1949]

I recently informed here that after nine therapy free years since 2014 (FCR) my CLL bounced back in 10/2022 with an DLBCL and a suspicion of Richters. Biopsy and Lab tests predicted that.

Therefore I was immediately treated with R-CHOP 14 CI Therapy first in Hospital one week and then within the ambulance in UNI clinic cologne (Prof Hallek),

The prognosis of RT scared me and I thought, the end is coming near, TP 53 was also tested, at least partly.

After R-CHOP in 1/2023 I discussed with Prof H. what could be done. I was given the possibility to have a CAR TZell Therapy. Because the private health insurance must approve, it took time. Meantime my blood work went to normal and the PET CT after the chemo showed, the DLBCL was complete gone. No larger lymph nodes or the like. The further CT in 4/2023 and 7/2023 showed no evidence, all normal.

I started to read all new info about RT and tried to understand difficult medical terms and descriptions. It was said that about 80% of DLBCLs are related to the underlining CLL and about 20% have nothing to do with the CLL, a second neoplasy. I checked all my lab results from Oct 22 to 2/2023 and found out, after my naive understanding, the CLL has not been the trigger of that lymphoma.

After consultation with my Docs in Cologne they ordered another lab with my biopsy from Oct 22, which still existed and my actual CLL probes. And the result was, the CLL has had nothing to do with Lymphoma. Meanwhile my CLL MRD was by 0,7 %.

The result was also astonishing for the Docs in the clinic. There will be a publication next to explain, that not all DLBCL is automatically a Richters Transformation, but only in 70-80%. This is very important to know for patients, because the word RICHTERS has a devastating sound.

For the remaining 20-30% of patients the outcome without Richters is much better, because only the CLL has to be treated, if it show up again, and there are a lot of meds available.

The only complication I experienced was a hear failure after the fifth cycle of R-CHOP in 1/2023 and poly neuropathy that left me with swindle. May be the result of Vincristin. But is has improved since by may be 90% and I will get a hearing device for my right ear.

I thought, this my encourage patient with the same problem.

Seoul

[Justasheet1]

Seoul,

Thank you for sharing your experience with that dark period in your life that ended with a rainbow for you. It is inspiring for us all to know that not all is lost with the RT transformation.

You had some extremely good doctors and that clearly helped which is the other take home message; get an expert on your team.

Jeff

[seoul1949 in reply to Justasheet1]

Jeff, that is right. after first treatment in other hospital I found the private ambulance of Prof H. in Cologne in 2013. All the way it has been an amazing time with the team and certainly the chef.

Face to face discussions with him always gave me tremendous hope and he and his team always convinced me not to be worried.

[AutumnJ]

Thank you so much for your post. I was recently hospitalised with a mass causing superior vena cava obstruction, due to suspected Richters. I started my first cycle of R CHOP whilst in hospital and have a review in clinic on Thursday prior to my second round. I am still awaiting biopsy results 😭, which seem to take forever!! I also have some neuropathy. I am trying to stay positive and I send you all my best wishes 🙏

[seoul1949 in reply to AutumnJ]

Staying positive is important. DO you also have CLL? Please read your biopsy results carefully to see, whether de novo or CLL related. If neuropathy is too difficult, you may ask to change the drug Vincritine to a different one. Keep us informed.

All the best to you .

[AutumnJ in reply to seoul1949]

Yes, I was diagnosed with CLL in 2018. I was just about to start treatment for CLL when the mass of lymph nodes in my chest started growing.

[bkoffman CLL CURE Hero]

Great news. Genetic testing of the tumor and the CLL can tell if you are the lucky 1 in 5 whose DLBCL arises de novo as a second cancer and not a transformation from CLL. RD is winnable for some.

[seoul1949 in reply to bkoffman]

It was at first unexpected for the medical team in Cologne, as patients with CLL and DLBCL normally are counted RT patients. When the staging Pet-CT after 6 cycles R-CHOP showed eradication of Lymphoma and coming back to normal blood results, Prof H suggested me a CARTZell Therapy, as most of the time, the RT would come back soon. Whilst waiting on approval of the health insurance - CART is still not fully accepted in this cases - and further PetCT also showed astonishing results, another medical evidence via a clonal check through a special laboratory was initiated. Eventually I received the insurance approval and days later the result of the Lab with letter from Prof H. Therefore the CART is obsolete. They want to publish the evidence now, because many RT patients get shocked when diagnosed as normal expectation is poor.

By the way, I have been following your CLL crusade through all kinds of CLL medication over the years via your blog and society always found an anchor there, that we are never lost in nowhere. Wish you all the best with your new treatment.

[bkoffman CLL CURE Hero in reply to seoul1949]

Thanks for sharing your kind words and great news. Pro. Hallek is tops in the world.

[NoMoRLS]

Thank you bc I worry about Richters being cll is not my 1st cancer

[studebaker]

Seoul those were some scary times for you. Fortunately you had the best outcome and very impressive dr Halek and his team

The best of luck 🤞

Dana

[seoul1949 in reply to studebaker]

Thank you Dana.

[Katinlr]

Thanks so much for your detailed explanation. I personally am terrified that I might at some point have a transformation of my CLL so am very appreciative of any hopeful news in this area.

[fayeander]

Sounds like you’re doing better at diagnosing your symptoms than the doctors are. I was diagnosed with CLL in 2015 and have been in remission since. After taking the Pfizer Vaccines and Booster in early 2021, I’ve had problems with WBC being high and my RBC below. Many other side effects from the Pfizer products also. I’m cutting on my second oral chemo for a muscle disease I’ve developed in my legs. On a cane and walker because of side effects. Good luck!