Diagnosed with Richters follow up - great news

[Louie_CC]

Late April prior to treatment September after 4 cycles

This is an update to my Diagnosed with Richters post a month or so back. I now go to MDA every 28 days and every third visit is a PET/CT scan and bone marrow along with the other routine test. I’m in the Pirtobrutinib, Venetoclax, Obinutuzumab trial that started May of this year. I got a PET/CT scan in late April before the trial began. When I met with my Doc after the end of Cycle 4 for the first results of the PET/CT to determine if trial was working, he was ecstatic. All the lymph nodes in my neck and chest that were lit up in April were gone. The 3 immunotherapy drugs are working great and I have had no side effects other than some nighttime muscle cramps and a little elevated heart rate with no Afib. I had decided prior to this to do a stem cell transplant, but now I’ve decided to reevaluate every 28 days after getting the FC MRD CLL Interpretation and Report. My Aberrant % total, MRD cells has dropped from .39 to .007 in 4 months. I wanted to post this to give those with Richters and other poor prognosis cancers some hope and information that these

Here’s a link to Diagnosed with Richters that will give some background of my journey.

healthunlocked.com/cllsuppo...

[HopeME]

Hello Louie:

Thanks for posting during what I am certain has been a very trying period. It is uplifting to read such hopeful news. Good luck with the balance of your treatment.

Best,

Mark

[laurieq]

Wonderful news! As you know, my husband is in the same trial which has been extended. He, too is choosing to stick with the trial for now rather that stem cell transplant or CAR-T. Praying for continued success!

[BigfootT]

That is great news. I wish you well! Thanks for sharing.

[Jm954 Administrator]

Brilliant news and even better that you've had such a great response to a non traditional chemo option with so few side effects

[PennyLane2024]

Excellent news!!! Congratulations.

[mickimauser11]

this is excellent but there are two different types of Richters one develops from a CLL clone the other is an independent clone according to Dr. Wierda at the CLL Global Foundation webinar which took place a week ago and a replay can be found on their fb page.

[BigfootT in reply to mickimauser11]

Yes, I believe about 85-90% of RT is clonally related, 5% non-clonally related and the other 5% HL or other. Non-clonally related is treated like standard DLBCL and HL is treated like standard HL. The clonally related RT is the area of research and need which I suspect this trial is working on.

Bigfoot

[mickimauser11 in reply to BigfootT]

According to Dr Wierda the clonally related Richters is harder to treat. But since it develops over time and precursor cells can be detected it is probably best to stop this development in some way. Probably an area of research too.

[Louie_CC in reply to mickimauser11]

I posted this on my previous post when asked the same question in a different way..

This is the reply from my Doc when asked if my RT was de novo or clonally related:

We rely on the ClonoSeq test to check the clonality. However, the sample was inadequate despite multiple checks. I discussed with our pathologists and the consensus was that if there are DLBCL cells in the midst of CLL, it is highly likely that the disease is clonally related. Therefore, we would consider your disease as clonally related. This would not change our current treatment approach.

[Lindy0311 in reply to Louie_CC]

Louie, I’ve recently been diagnosed with RT and have been following this trial. Thank you sharing your update, it sounds very promising. Can you tell me if you have any bad markers like 17p or TP53? Just wondering how effective it would be for those of us with those bad markers and RT.

[Louie_CC in reply to Lindy0311]

This is my diagnosis:

Primary Diagnosis: CLL - high-risk (IGHV-unmutated;FISH: +12, del 17p; NGS: TP53, DDX3X) with Richter Transformation (DLBCL)

I’m doing great on the PVO trial. I’m happy to share my experience.

[RogerPinner]

That is fantastic Louie, I'm so pleased for you. Decision made for the time being at least.

Roger

[Rando21]

incredible congratulations

[thompsonellen2]

Wow that is so great. Very happy for you! And this so much easier than other treatment options. Thanks for posting.

[Smakwater]

WoWzer!

That is cool to see.

Stay Clear,

JM

[Mahler5]

Wow you seem to have good care in USA. I was diagnosed with grade 4 B cell and Richters CLL in2021. I have had 2 years remission after R Chop chemo. However I now have excessive tiredness and high temperatures daily. Had cat scan showings 3 areas of small enlarged nodes. I am still on watch and Wait but the symptoms are getting me down. I wish I could start the inhibitor drugs now but they say I have to wait until nodes increase or larger. I only ever see the specialist nurse and have NOT seen a consultant since start in 2021 so am now feeling abandoned. This is our great UK NHS! Glad you are doing well..perhaps you are one of the 20% Richters who live longer than 4 to 5 years. Keep it up!