I want to update the status of the Richter transform group.
Three weeks ago my hematologist told me that after insisting so much that all Richter's cases be shared between doctors, it has finally been achieved. He told me that they had managed to collect 52 cases throughout France and work together to improve the treatment and life expectancy of patients.
Since the life expectancy of CLL is currently higher due to new treatments, the Richter's Transformation is also more likely to increase, so I think hospitals around the world would have to share the files with the cases so that they can be studied for the future . That way you can see how the treatments work, and also have statistics by age and also the status of the patient at the time of diagnosis.
It will also be important to do more tests in addition to the biopsy or the Pet Scan to rule out a Pseudo Richter and thus save the patient from free aggressive chemotherapy.
I also want to comment that for those newly diagnosed with Ricther, they are starting R-CHOP and Venetoclax at the same time with good results.
It has been shown that the first line R-CHOP does not always work and the RT always comes back.
After three years of being treated by my RT, I am coming to the conclusion that it should not only be treated as a Lymphoma but also as a CLL, give two treatments at the same time to achieve complete remission and cure with the first line. of treatment
On the other hand, to say that people come to the group very scared because all the information on the internet is a death sentence. I have to say it's fake. There are cases in which the disease is very advanced and it is difficult to bring it into remission because the KT is very widespread, but the vast majority are kept at bay or the five-year survival is high. As you know, after five years, the patient is considered cured.
Resume. We must do everything possible so that all Richter's cases are shared between countries and hospitals so that they can be studied and we are not lost cases for doctors. I'm sick of doctors already condemning you to death when they diagnose you with RT. It is important to study cases to improve treatments and improve prognosis.
However, I would reject your sentence - "It has been shown that the first line R-CHOP does not always work and the RT always comes back."
Richter's often comes back but there are many cases where R-CHOP has achieved a cure of the DLBCL. It is the CLL that returns and, of course, some people develop Richter's again because their CLL is so badly predisposed to it.
Exactly and I think it would have to be treated with two different treatments at the same time.
My question is whether R-CHOP really works for those who really have RT.
I know people who were diagnosed with RT and the Pet Scan showed tumor uptake, but after R-CHOP they no longer had tumor uptake but they continued to have the same masses, but this time with CLL cells.
The difficulty is that CLL and Richter's are two completely different types of lymphoma, even if they are clonally related, and so respond differently to different treatments.CLL is typically indolent (a low grade lymphoma) and so harsh chemo which targets rapidly dividing cells has little effect in the long term. There will always be lots of CLL cells that were not in cell cycle and so are left unscathed. This is where the new CLL treatments are so wonderful because they do not rely on that process but on the cell signalling pathways that promote and sustain the CLL.
Richter's is a high grade lymphoma with large numbers of rapidly dividing cells that are more easily killed by intensive chemotherapy. It's also not unusual for large lymph nodes to shrink but not disappear completely. This doesn't always mean they are still malignant but they can be 'necrotic' (dead).
Some of the new treatments for Richter's combine R-CHOP or other chemotherapy with a novel treatments that is used for CLL. We do not know yet whether this is effective long term but more is not always better, especially for older patients with this disease.
Now they want to start giving R-chop along with Venetoclax to help cleanse the marrow. I think a combination of lymphoma and CLL treatments would work well. Richther is chemoresistant, but if we give him a combination of CLL treatments, I think it can change the prognosis.
Please do! It's a locked post so members of your group would need to be members of HU to read it. So, you may wish to include the link to the actual review article in what you share so all of your members get the information. It'd be appreciated if you could acknowledge that you became aware of the article through this group and include the link to the locked post as well. Thanks and best of wishes to you and your Richters group members.
'I also want to comment that for those newly diagnosed with Ricther, they are starting R-CHOP and Venetoclax at the same time with good results.'
Dear Toni,
Thank you so much for the update. This is wonderful news!
Your updates always bring tears to my eyes. It's not only the considerable effort and dedication you make in improving the outcomes for those with RT, it is also the compassion and empathy you have for their experiences with it.
As a person who was diagnosed with Richter, I want to make sense of all of this. Since I was diagnosed, I have met many people and thank God there are more survivors.
I am discovering thanks to the experience of other people and mine is that there is RT but there are also people who have been misdiagnosed and after two sessions of R-CHOP they discovered that it was CLL.
My CLL is very aggressive, in fact now I am in treatment again, but people who have recently died like Gunnar or others, no treatment was effective, they only managed to get them into remission with CLL treatments, but temporarily.
I understand that there is a fight to share all RT case files among doctors. The RT has to be studied more so that the prognosis stops being bad and the treatments can work the first time.
Toni, I am sorry to read you are in treatment again but wish you all the best for effective and long lasting results.
Getting doctors to move forward from past assumptions I am sure is difficult unless they are in a research environment. I know my husband has had that challenge in the past where the doctor's assumption wasn't always the accurate or definite one.
Great update! Thanks for you efforts to expand understanding of this challenging diagnosis! You are no doubt helping countless patients in the future with their search for answers.
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Richter's transformation???
