I was originally diagnosed in May, 2011 and had a long 9 year watch and wait.
Feb,2020 Dr Thompson put me on Calquence as I was become a little anemic and this treatment gave me great results.
Feb, 2022 Dr. T and I agreed to add Venetoclax in an attempt to try to reach uMRD and have a drug holiday!
April, 2024 my new doctor (after Dr. T left to go back to Australia), Dr. Ferrajoli ordered a Bone Marrow Biopsy as my PB had gotten down to 0.007 in February, 2024. She called me last week and said the test showed no CLL cells and she was taking me off both drugs! I’m in remission!!!!
I am so thankful for both of these amazing doctors and for MD Anderson and for all of you CLL warriors. You have all taught me so much. I will see Dr. Ferrajoli in August for follow up and hoping after that I can just see my local oncologist and not have to go to Houston but 1 or 2 times a year. May all who have reached this point and those who are still getting there have long and deep remissions.
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DGG1931
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Seven years ago at MD Anderson. A phase II Study of Venetoclax (ABT-199) consolidation for patients currently receiving ibrutinib or acalabrutinib for High-risk CLL (clinicaltrials.gov/study/NC... They've reported data a few times at ASH over the years. It looks good enough to me.
I'm interested in consolidation but haven't found the right trial nor enough data to convince my specialist (yet).
Did your doctors discuss their thoughts on Venetoclax retreatment? I start in two weeks. They are doing a Z and Sonotoclax trial at my hospital. I didn’t have time to get into it. Sounds like it is working well.
My understanding is if I should relapse at some point, I could go back on this treatment. However there are also many new treatments on the horizon as well.
I just return to MDA after a biopsy of a node a recent PET/CT discovered in my Mesentery. I had been dealing with enlarged neck nodes since Dec and Ultra Sound came back with questions so got a hold of my team at MDA and eventually (my push) for a PET/CT. They agreed and turn out I had multiple areas with some enlargement, but one in the Mesentery (I had to look up where that was, lol) was 3.3 cm. My blood work looked good except for my LDH was high. Long story short I pushed for a biopsy and they agreed. Great news is the Radiologist was able to do a core and a needle of that node and it came back as SLL/CLL with no sign of Transformation. I will meet with a new Oncologist next Friday at MDA in the Leukemia dept as I have always been on W&W in the Lymphoma dept. We will discuss different types of treatment options including continuing W&W. This site has been so helpful in explaining the actual experiences people deal with on the various treatments. I have been on W&W for 14 yrs and there have been so many new advances, but I have also developed some health issues that have to be considered. We will figure it out! Celebrate your hard work won!
I completed V+O treatment in February. Received the results of the ClonoSEQ test 2 days ago. Zero cells detected! Congratulations to you reaching uMRD. Time for both of us to celebrate!
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