Large Lympe nodes.

[Harry9kane]

Been on venetoclax for last 20 months and now find myself with large lymphe nodes under arms and painfully in groin area which is restricting artery in leg, which is resulting in leg swelling.

Am waiting for biopsy results, but concerned what current treatment is out there to resolve the problem. Anyone else with similar issues?

[neurodervish]

Hi Harry, I'm so sorry you're going through this. Are the enlarged lymph nodes new? I'm not a medical professional, but it sounds like your body isn't responding to the Venetoclax (a selective BCL2 inhibitor). I searched "Venetoclax resistance" online and found a lot of articles written in medicalese, so I hesitate to share them. However, in this brief video, Arnon Kater, PhD, of University of Amsterdam shares info that Venetoclax is good at clearing lymphocytes from the blood & bone marrow, but less good at getting it out of the lymph nodes. He discusses using it in combo with a BTK inhibitor called Ibrutinib. youtube.com/watch?v=00M59__...(Not working as expected?)

Here in the US, Venetoclax is often used in combo with the drug Obinutuzumab (aka Gazyva). I think the one-two punch may be the secret sauce for clearing out those pesky lymphocytes that congregate in our lymph nodes, spleen, blood & bone marrow collectively.

So my questions for you are:

1) Are you seeing a CLL specialist? I ask because I've read that lymph node biopsies are not common in a situation like this. (Again, I'm no expert)

2) Have you gotten a FISH test? It tells you which chromosome(s) are involved in your CLL (prognostic markers), which in turn informs which treatment has the best chance of helping you. cllsociety.org/newly-diagno...

3) Have you been tested for IgVH mutation status? It also plays a very important role in determining which treatments(s) have the best chance of helping you. cllsociety.org/2018/09/what...

Wishing you the very best

[neurodervish in reply to neurodervish]

PS - Just want to add that getting a CLL specialist (as opposed to a general oncologist or even a general hematologist) can make a huge difference in your health outcomes. Patients who are unmutated and/or have less favorable genetic markers can be irreparably harmed from inappropriate treatments.

This article, just shared by  Hoffy , is an example of someone having success with a combo treatment of Venetoclax + Ibrutinib (aka Imbruvica) cllsociety.org/2023/12/upda... It's a wonderful read, and an important reminder of why it's absolutely crucial to educate & advocate for our best health outcomes with CLL.

[Harry9kane in reply to neurodervish]

Many thanks to all, having biopsy results today.

Harry.