I hope everybody is fine. I feel good, the only thing is the joints that are destroying me with the treatments. My knees hurt a lot.
On the other hand, I would like to comment on the cases that Ricther is entering within the Facebook group. Every day we are more, with what we are more cases and different experiences. Within the group there is a German boy that no treatment is working and now the only way out is the Car-T. The Ricther overtakes him and asks for donations because in Germany they refuse to give him the Car-T due to his bad prognosis. All other cases have received or are receiving R-CHOP as their first treatment and will then proceed to cell transplantation. There are two cases in which they are older and the condition is very bad because they have CLL to the maximum and Richert at the same time and they send them to palliative because they say that the treatments would kill them because of the bad state they are. Both cases are from the United States. One of them has been told by the doctors not to make it to Christmas and it is a pity because he wants to continue fighting but the doctors do not want to give any treatment. The only thing they give them is cortisone.
There are also cases where Ricther transformed once ibrutinib was withdrawn for a few days and will be treated with R-CHOP anyway. Fortunately, this week there is a woman from the United States who celebrated her five years of complete remission after a transplant of cells from a donor. It is a hope for all, since at the age of five she can be considered cured. For my part, another 42-year-old boy and I have been in remission for just one year with R-CHOP and we pray that we will continue to do so. I also want to say that chemotherapy and radiation therapy for my breast cancer have damaged my heart and they will test me to see if they have to operate. If the tests went wrong, both valves would have to be replaced. It is the bad thing about the treatments. Otherwise, I feel good and happy. The important thing is to live as long as possible.
Priss, thanks for the update. You have become a great source of information for our community on Richter's related issues. I am glad you are feeling well and wish you the best on the results on your tests.
Here is a recent encouraging article on Car T with Richters which you might have seen already:
Conclusion: CD19-CART-cell therapy in CLL patients with disease transformation is safe and has high complete remission rate with promising clinical response. Long term remission rate after CD19-CART-cell therapy for RT needs to be further evaluated in more patients.
Thank you so much for this information. I'm going to share it in Ricther's group. The truth is that the people who come in are happy because we only talk about Ricther and some get advice and share information. Finding so many Ricthers together is very difficult and in the group we are already more than 100 people. I will pass this link also to the man who will do the Car-T. I think he will be very happy.
Thank you, Toni, for the update and a big hug you. Thoughts and prayers 🙏💖 for your health and to those that you are helping. 💕 Thank you for all you do.
Hi Priss, You mentioned a person who had Richter’s transformation upon stoppping ibrutinib. There is an article on pseudo richter’s transformation upon ibrutinib stoppage. Tried to send but couldn’t. It can be easily googled.
Yes, I know which one is it. In August he offered to study my case in genetic study in Spain with Dr. Elías Campo. My case is believed to be a Pseudo Ricther and I offered my blood to study it and share the study around the world. They have blood since the beginning of my CLL. They have biopsies of a breast cancer that was there when they detected my Ricther and they also have the blood that they took from me in August, where I am in complete remission. With everything they have they can do a complete study and help other people who can transform into a pseudo Ricther.
They told me that they were going to investigate as much as they could and also offered all the blood that they took from me to other researchers in case they wanted to contribute something.
I had what looks like pseudo Richter. Biopsies showed transformation only to spontaneously change back by the time I had a pet scan 2wks later. The team have kept a beady eye on me since. All looking good up to last CT scan which showed enlarged internal nodes around trachy, near heart & around diaphragm- all axillary nodes were normal. Further ongoing investigations - not panicking at present and trying not to freak out my family.
Let me understand. She was taking ibrutinib and had to stop taking some biopsies, right? Then they did a biopsy again and it turned out you didn't have Ricther. Once he was given ibrutinib again, he had a biopsy again and Ricther came out again. This is how I understand it.
Not quite 😀. I was taking ibrutinib, I had to stop taking ibrutinib due to a head wound, I was biopsied 11 days later which confirmed RT. I was given PET scan 11/12 days later which showed no RT. I resumed taking ibrutinib a week later.
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