First line treatment failure. Transformation.

[Phs2385]

My father has been on the combination obinutuzamb/venetoclax first line treatment for CLL with aggressive features since March 2020, and had his one year CT scan yesterday.

We were so hopeful that Plan 1 would be promising, yet the results are very troubling.

-CT Results:

1. There is new perirenal soft tissue in the right retroperitoneum consistent with lymphoma

2. There is new extensive central peribronchial thickening which likely represents lymphomatous

involvement

3. New multifocal infiltrates probably representing a combination of lymphoma and perhaps

aspiration.

-Lactate Dehydrogenase Value: 806 U/L.

We have an appointment with our CLL socialist on Tuesday, but I want to mentally prepare and start my research now. Do you have insights about what the next treatment paths could be? I thank you for time and advice. I am in so much pain. 😔

[Jm954 Administrator]

Hi there, I'm sorry to hear that it appears your father's rather aggressive CLL/PLL has possibly transformed or is at least resistant to Venetoclax/obintuzumab.

You don't say how old your father is but his age and level of fitness may determine his next treatment. It is possible that the 1 year CT is a blessing in disguise as it has allowed this to be picked up early and may help bring a positive outcome.

The next step is almost certainly to do a PET scan and biopsy some of the 'hot' nodes if they are easily accessible. The histology will then tell the doctors exactly what is happening and what the treatment pathway should be.

If it has transformed into a high grade lymphoma then it's possible for this to be treated and cured with intensive chemotherapy or perhaps an experimental combination of target therapies in a clinical trial. As I said, that will depend on your father's level of fitness and physical ability to cope with the treatment.

I hope all goes well for him, please let us know what happens

best wishes

Jackie

[Phs2385 in reply to Jm954]

Thank you so much, Jackie. I appreciate you so much. Thank you for keeping us in your prayers. <3 I will do so likewise.

[SofiaDeo]

Sorry to hear this. I have had some treatment failures & it's always distressing. I think, like Jm954, further testing needs to be done before considering treatments. Depending on those, plus his markers, will likely determine the best treatment options.

[Milla15]

Sorry, no helpful treatment thoughts, just wanting to send hugs. These are difficult times for you and your family. Be tender with yourself, and just remember this would all be so much harder for your Dad without your loving support. These things make a great difference. xx

[casanova]

I can't anything constructive on treatments but having had a number of "failed" treatments I know how devastating this feels. Thankfully issues have been identified and you have an appointment soon to discuss the way forward. Make notes of all options suggested by your Father's specialist and you can go away and research more if you wish and then ask more questions of the specialist if needed. I hope you and your Father have a positive consultation.

Maureen (UK)

[Felixgratus]

Sending you sympathies and best wishes! Positive thought: there is more depth now than ever before in being able to analyze patient response and profile, and also in the variety of therapeutic approaches, with more coming along soon!