Richter’s Transformation

[Priss69]

A reminder to everyone going through the treatment process. Currently, Richter's cancer is not considered an incurable cancer or one with a poor prognosis. It is currently considered an aggressive lymphoma. Mortality is the same as that of diffuse large B-cell lymphoma. The greater the tumor uptake, the more treatments must be administered. The lower the tumor uptake, the more effective the treatment will be. Five years ago there were practically not many alternatives. In fact, we have seen that many of this group have lost the battle but they had a lot of tumor uptake and were really complicated cases.

So I encourage everyone to keep fighting.

facebook.com/groups/1002255...

[Wonderwoman23]

Thank you for your post. Very encouraging!

[Poodle2]

Thank you Priss69, you always seem to post at the right time when someone who is potentially dealing with RT needs to hear just this 👆🏼

[Priss69 in reply to Poodle2]

Every day there is someone who is diagnosed with RT. We must remind them to stop looking at the Internet and educate themselves about current cases. We must remind these doctors that more people live than die. We are no longer a death sentence. We must remind them that although there are people who die, they are only 10% of all those diagnosed with RT.

[Mystic75]

Thank you, Toni! How are you doing?

[Priss69]

I currently have four months left to finish the Venetoclax treatment. Then they will look at me to see if I have traces of the disease in my spinal cord. Now the problem is that my mitral heart valve closed. Next week I have a consultation with the cardiologist and he will most likely schedule me for an operation. I'm going to tell you if we can wait four months to finish the Venetoclax treatment.

[Mystic75 in reply to Priss69]

Sorry to see that you have this additional issue to deal with. Wish you all the best and hope the timing works out for you. Please let us know how it goes. ❤️

[Jooby59]

I was diagnosed with Richters last summer and had 6 sessions of R CHOP which was successful - there is no sign of it at all. I am now on Aclabrutinib which has put my CLL into medical remission too. My advice would be to reiterate "do not Google Richters"!

[DriedSeaweed in reply to Jooby59]

I don’t know if suggesting not to google it is a good idea. It is still quite deadly and people might be more proactive about treatment knowing the risk of death. Some people might find a level of anxiety can get them to search for the best treatment for their situation. This worked for me when first learning about CLL. I am better off and more educated because of it.

Also, I must be missing something… can someone provide sources that only 10% of people with the transformation die? I welcome this news but I would think I would have heard this at major hematology/oncology conferences announcing such great news. Huge standing ovations. I realize it can be cured. But long term survival for most cases…

[Jooby59 in reply to DriedSeaweed]

Of course its up to individuals whether they Google or not but if they do then they should be aware that the information is out of date. Nearly all the articles give a life expectancy of circa 10 months - not the norm now with the modern treatments and trials.

[DriedSeaweed in reply to Jooby59]

I suppose where my confusion arises is that even recent medical conference coverage have the same tone. I haven’t noticed anything that deviates hugely with older data. RCHOP still being used and newer treatments don’t seem like home runs. Not trying to be Debbie Downer I just worry things might be overstated.

[Jooby59 in reply to DriedSeaweed]

Do you have Richters?

[DriedSeaweed in reply to Jooby59]

Nope. Fortunate so far.

[Jooby59 in reply to DriedSeaweed]

Then I hope you never do. But if you do then I would advise adopting a more positive attitude towards the outcome as I think a huge part of fighting it (along with the fabulous new treatments) is a belief that you will get better.

[SofiaDeo Administrator in reply to DriedSeaweed]

I vote more on the "don't Google" side for people without a lot of knowledge of how to search for current medical information. The docs will be pushing for treatment, things will be moving rapidly.....reading about old fatality statistics that are at the top of most search engines won't help as ones' doc is pushing you to rush to the hospital/start treatment NOW. I agree it can be deadly, but IME cases of suspected RT, people are moving fast, like in suspected acute leukemias. No appointments weeks out; they want you to drop everything & drive immediately to the hospital, if you aren't already admitted. If you aren't savvy at medical literature searches, and you start Googling one of the top things is the 2022 ASH statement talking about the historical data. Which isn't the most recent years' improvement in the statistics. So one is rushed to the hospital, starts reading, and gets panicked at the old statistics.

[Priss69 in reply to DriedSeaweed]

Hello.

Within our TR group on Facebook, the reality of this terrible transformation has been verified with real testimonies. People do indeed die and the treatments are not effective but it also depends on the tumor coverage you have. It is not the same that you have it located than that you have it extended. But I can also say that there are people who have been in complete remission for years and are cured and others who after three years are still receiving treatment but continue fighting.

Ryan recently left us, a young man who was diagnosed with CLL when he was 18 years old and was transformed into RT. He went through all the treatments but finally his body couldn't take it anymore. He had it spread all over his body. People can enter our group where they will see real and current testimonies.

[Priss69 in reply to DriedSeaweed]

..

Currently, Car-T is being given directly as the first treatment because it is known to be effective and has less toxicity.

[janeychen5712 in reply to Priss69]

hi Priss! Do you mind sharing CART given as first line treatment is still in clinical trial or doctor can use it for fist line RT treatment? My father is diagnosed with RT recently and his doc provided a treatment combining R-CHOP and Venotoclax. But the doc didn’t mention CART as one of the options. Would be great to learn more.

[Priss69 in reply to janeychen5712]

R-CHOP is not sufficient to ensure complete remission. It must be treated like a lymphoma and like a CLL.

[Skyshark]

Wherever you are it's not the case in the UK. I have a copy of a letter from my haematologist to my GP 17th Feb 23 that says I don't have Richters and I do not require R-CHOP chemo.

There are trials of R-CHOP +/- BTKi (TN), a ROR-1 mab (R/R) and a CBL-B small molecule drug (R/R).

bepartofresearch.nihr.ac.uk...

EDIT>

CAR-T is only available for R/R DLBCL after two lines of therapy.

england.nhs.uk/2018/10/nhs-...

england.nhs.uk/wp-content/u...

EDIT 2 from 2018 news link above>

Axicabtagene ciloleucel is licenced to treat adult patients with diffuse large B-cell lymphoma and primary mediastinal B-cell lymphoma after two or more previous therapies have failed. Trials indicate that the therapy could potentially cure 40% of patients.