Gazyva and Ventalox

[CityL]

I started G/V treatment 4 months ago. Everything went smoothly for 3.5 months. Now some lymph nodes are appearing on my neck. My Doc stopped the treatment and called for a Pet scan and a biopsy of lymphnode. Anybody been in my situation and what was the plan, diagnosis, options etc.?? Very Nervous,

Rob....

[Jm954 Administrator]

it sounds as though the treatment is not working for you and your doctor has ordered a PET scan and the biopsy to rule out a Richters transformation of your CLL.

Hopefully this is not Richters and you just need a change of treatment that will suit you better. If it is Richters then it is curable with the right treatment and it sounds as though you’re in good hands with your doctor.

Let us know how you are

Jackie

[Skyshark in reply to Jm954]

Have you got any references for "Richters is curable"? I thought it was only NHL-RT which accounts for 5-10% of RS, that had reasonably long OS when treated as NHL-notRT chemo.

[CoachVera55]

I have not been through that but I see we were diagnosed 1 year apart, 2009 for me @43yrs old. I started treatment 7 months ago with full dose Zanubrutinib 320mg daily & developed chest pain. I tried Acalabrutinib 100mg daily for 10.5 weeks but my unresolved pneumonia contributed to chest pain again & palpitations for the first time.

I switched back & stayed on Zanubrutinib only 80mg for 3 months so my lungs & heart issues could resolve but I felt abdominal lymph nodes growing again. Once a new Pulmonologist & both Cardiologist cleared me I moved up to 160mg daily & I feel the lymph nodes shrinking again. I did developed Pleurisy type pain again, started antibiotics early this time & I am slowly recovering. Thank GOD we have so many treatment choices & trials going on right now. I wish you the best & I hope that you’ll be able to talk with your doctor, because clear communication is so very necessary. Not knowing is unbearable for me so if you don’t have a CLL Specialist, please get one. I am the pushy type so I’d keep calling or schedule an appointment to get the full answers & plan of care🤦🏽‍♀️

[mickimauser11]

The result of the biopsy is important because it will show what kinds of cells are in the lymphnodes In my case it was therapy damaged cells very few which survived OV therapy. But everyone is different.

[Samm22]

Have you had any recent vaccines that could have possibly contributed to this? Do you feel fine otherwise?

[IRN83]

My first experience with V&O was favorable and I got into remission which lasted less than zero 2 years. The second time I had to stop because it was destroying my immunity and not the cancer.

[Katinlr in reply to IRN83]

May I ask what you used after the second Venetoclax failure?

[IRN83 in reply to Katinlr]

None yet. I’m waiting and watching the numbers climb. There are two new derivatives of Ibrutinib that my oncologist mentioned when I started V&O the second time but I didn’t want to try either of those because of my past experience with ibrutinib (I’m allergic to it).