Hello.
I would like to ask if you know of any current clinical trials for patients with Richter's Transformation who have already reached the Car-T and it did not work for them.
We have in our group a very young 22-year-old boy whose Car-Ts didn't work for him in the UK. They have told him that they can no longer do anything for him and they send him to palliative care.
If you know of any clinical trial please inform me.
A hug.
All the very best at finding some help for him….this is about as sad as it can get….many prayers !!!!🙏🙏🙏🙏
Panz 🙏🙂💕☘️
If he's 100 days post CAR-T, exhibits some B cell recovery, and meets other criteria, this one is a possibility:clinicaltrials.gov/ct2/show...
Also this:
clinicaltrials.gov/ct2/show...
It's possible he may be eligible for a loxo-305 cohort:
This young man sadly clearly has a very aggressive and resistant lymphoma and I'm so sorry this is the situation. The current Richter's trial in the uk is STELLAR but it would not be of help to him in this situation.
The only combination that I have heard of that might work after his prior treatments is Revlamid, Venetoclax and a Humanised Fc engineered monoclonal antibody against CD19 called Tafasitamab or Minjuvi in the UK. There is a patient on the FB group who posted recently about being in remission following this combination. If it's not available then he may be able to get it on a compassionate use basis direct from the manufacturer if requested by his Doctor.
Jackie
The problem is that now he has it in his liver and bones and the doctors have told him there is no cure and they want to stop treating him. They are going to give him chemo to control the lymphoma but they don't know if it will work. They say they give him a few months to live. We are looking everywhere. We know that after the Car-T it is still possible to do another type of transplant and they have sent the documentation to the United States to see if they accept it in the clinical trial. It is a very difficult situation.
Is there anything at MD Anderson in Houston, Texas?
Do you know if there are clinical trials here?
No, I’m sorry I don’t. However, my sister had 17p deletion and was on a trial at MDA with Ibrutinib . She was on it barely a year and because of the aggressive unmutated 17p it turned to Richter’s. Thus, with insurance approval, she had a Stem Cell Transplant March 12, 2021 and is doing well. Of course, it can take several years for her immune system (being immunosuppressed) to develop. She continues with labs every week and meds accordingly in her residence of Colorado. We are extremely hopeful as she is doing very well!
The links I gave previously were for a search done looking for sites in the UK. Here are the trials specifically saying they have sites in France according to clinicaltrials.gov
clinicaltrials.gov/ct2/resu...
One is only for information gathering, but the others involve medication. #2 is specifically for RT patients. There's a Phase 3 one comparing a new agent against either BR or R-GemOx, he would have a 50:50 chance of the new agent instead of one of the chemo groups if his docs are looking at chemo anyway. One is a Loxo trial. I hope this helps
What about allogeneic sct? I’m sending every prayer his way🧡
They are proposing a transplant in the United States, but now they need to approve the transplant. Doctors in the United Kingdom have to fill in some documents that have been sent to them to find out if they can enter the trial.
Wishing him the best - in a very tough situation….You are an amazing person - reaching out to find even a glimmer of hope- that can help!
You have to try everything. People like me who have had the Richter transformation know what it is and we need to help others as much as possible.
What about this? Intended for young people with treatment resistant cancers. NHL/leukemia included as category.
Not yet recruiting in UK but wouldn't hurt to ask how soon. Also, it is recruiting in other European countries.
Not Richter's specific... Phase 1.
"Must have received standard of care therapy and there must be no potentially curative treatment available
Histologically confirmed with malignant neoplasms that are refractory, relapsed, or curative treatments are lacking."
clinicaltrials.gov/ct2/show...
United Kingdom
Local Institution Not yet recruiting
Birmingham, United Kingdom, B4 6NH
Contact: Site 0066
Local Institution Not yet recruiting
Newcastle upon Tyne, United Kingdom, NE1 4LP
Contact: Site 0057
Local Institution Not yet recruiting
Sutton, United Kingdom, SM2 5PT
Contact: Site 0041
Thanks a lot.
We are looking at all possible sites and only get negative responses. The vast majority do not accept Richther's Transformation for clinical trials. It is incredible how in cases of Ricther we are taken out of rehearsals without having the slightest opportunity. We only ask that we have the same opportunity as other types of cancer.
Once you do Car-T they tell you that you can no longer enter any other clinical trial.
It's scary how few chances you have.
My impression is that many phase 1 trials would be directed toward people who have exhausted most therapies.
It is sad if Richter's is discrimated upon.
I figure the hope is to find a target all previous treatments have missed. Perhaps ROR1 would be a good next target. Compassionate use of Cirmtuzumab?
Not to sound too ageist but a 22 year old should be able to try as many treatments possible. Life has just got started...
It's okay because he's young. It is true that the Richters feel discriminated against. They define us as if we were hit by the plague. In my case, after almost three years, I was still alive, even though they didn't give me more than four and a half months to live.
You have to have the same treatment rights as everyone else. For doctors we do not have lymphoma if not Ricther. It's very cruel.
IMO the big problem is, if early study results aren't promising, there is no money allocated to expand the study to more patients. Early studies aren't looking for clinically significant numbers of patients, they are looking to see if something possibly works. So researchers often look only for somewhat stable patients: no Grade 3 or 4 toxicities, no metastases, normal organ function, etc. Thus an aggressive RT excludes many.
I hope something here works for him.
It's the problem that they don't even give him a chance. As an aggressive lymphoma in the same situation they have more treatments after the Car-T and in the case of Ricther no. This boy is only 22 years old and has a great desire to live. He wants to fight until the end and the doctors say that they will not allow him to be treated any more and only give him palliatives because he has no cure. He is very sad.
Well, the links I gave say they allow RT, if he is stable enough, and 60-100 days out from Car-T. And the one study is specifically for RT patients/aggressive CLL/SLL. So hopefully there is something in France or UK and he doesn't have to travel across an ocean.
Priss69,
From Justasheet1 previous post -
healthunlocked.com/cllsuppo...
JM
Thank you very much for all this information you provide. We are seeing that in Ricther's group many people who joined two years ago are dying. Above all young people who is more aggressive. Treatments don't work. Yes, it is true that there are cases where the transplant has been enough and no more treatments have been necessary.
Thoughts and prayers for this young man and for your efforts, Toni, in finding a life line for him. 🙏❤️🍀
D.xoxo
I swore that if I got out of my Richter it would help everyone in the same situation as me. So I will continue.
You are an amazing person, Toni, because you have the direct courage to love with the real possibility of loss, putting love first. The comfort you provide to those who suffer from Richters, where comfort is scarce and has to be sought after with such hard work and dedication, is invaluable.
It is easy to imagine what a huge difference you make in people's live but even my imagination probably doesn't fully comprehend the actual difference.
I only know that if I were in a life-threatening situation, I would want you there, knowing you were fighting like heck on my behalf.
D.❤️
You're not going to believe this, but I'm just doing something I wish would be done to me. I felt so alone and lost when I was diagnosed with Richter that I swore to myself that I wouldn't let anyone else go through the same thing. Many people in the group have passed away, but even when they leave I always tell them that our destiny is written from the moment we are born. I always tell family members to try to live intensely those months or last days of life. A good meal, at home on your sofa... would be the ideal way to leave this world but in the meantime you have to fight and look at all the alternatives, because sometimes miracles exist.You can count on my support if you ever need it, because even if I'm worse off than you, I'm going to fight tooth and nail for you.
Toni, I absolutely do believe it. As humans, we can weather many hardships, even death, but I think the one hardship that is the most difficult is the feeling of being abandoned.
You provide wise counsel and support - I will never forget what you did for DavidGH and what a difference you made in his life, Toni.
D.xoxo
I remember David a lot. I am still waiting for his response to the email from him. It was all very surreal. At five in the afternoon he writes to me saying that he was going to the hospital because he was drowning. The hospital had been telling him for a month that he couldn't go because there were risks from Covid. At nine o'clock at night he writes to me again and he tells me that he is in the ICU and he tells me that they have told him that he has pneumonia. At 11 at night he wrote me again and it was his last email. He wrote me things that didn't make sense. They were few words but I think he wanted to tell me something and he couldn't write well. His son told me that he died at 11:20 at night. I always thought he wanted to say goodbye to me. He was a wise and intelligent man.
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RICHTER'S TRANSFORMATION IN PATIENTS WITH CLL: ANALYSIS OF BIOLOGICAL AND CLINICAL RISK FACTORS AND OUTCOMES
