I am please to announce that after my 9th cycle on the Imbruvica plus Venetoclax trial I am Min Residual Disease (MRD) Negative in the blood and Compete Response CR on the MRI. I hope it continues... I am very pleased given I am 17P deleted. My nodes were very big when I started. I was only on WW for 1 year before starting treatment due to node size.
I feel good. I have continue to work and exercise through the entire treatment. Side effects have not been too bad. I have been neutropenic a couple time but they just give me a shot and my ANC comes back up nicely.
I have had an outer ear infection and a toe infection and both were cured with topically antibiotics. My nails are not as strong as they use to be so I now take Biotin and it seems to help.
I will do another test to check for CLL Cells in my blood in 6 weeks. If they do not see CLL again then I will have a Bone Marrow Biopsy at the end of the year ( fun...)
If I am then MRD Negative I will be randomized and either stay of Imbruvica only a placebo. If I am not MRD negative then I will be either on Imbruvica only or both drugs.
Thats excellent news. I had my three month doctor's visit today and I didn't want to miss the opportunity of being in the same trial so I signed up today and will start next Friday on Ibrutinib then in 3 months Venetoclax. I thought I could change my CLL on my own by refusing treatment and just go the natural path way but after reading all of the responses on here from this wonderful community I decided I couldn't do it alone. I wish you all the best on this journey and I hope to have the same results as you.
So excited for your results, Hoffy! Hope to be right there with you in about 12 months!! 2 months in on the Ibrutinib. Start the Venetoclax next month. Keeping my fingers and toes crossed.
My husband, Mark is seeing Dr Jain. We just got back from there. Probably saw you in a waiting area. What a place! So grateful and humbled by everyone there.
Hoffy , such fabulous news! So happy for you. These new drugs are amazing. When I was diagnosed in early 2014, my doctor told me that treatments for CLL were rapidly changing- especially for those of us with 17 p. He certainly was correct. As with so many things in life, timing is everything. So thankful to all the scientists , and especially those fellow CLL patients who joined so many trials hoping to help us all.
I forgot to mention I have had periodic dull node pain. I think it is from my nodes shrinking.
I also had some mouth sores. A drop of Green tea oil on my tooth brush seemed to make them go away. Watch out the green tea out can be strong but gives a real fresh clean....
I'm at about the same stage as you on the I+V trial and got the CR news a week ago - all nodes normal size and all blood test results have been in normal range for a few months. The month before I only got the PR result as 1 of my nodes was 16mm (1mm above the cutoff!). I didn't get the MRD assessment though but they took a few extra blood samples so they may be doing that now.
This seems to be working very well for all of us that I know of. No guarantee for how long, of course, but it's a very good start!
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Finished breaking and started fixing: MRD - in the blood after CAR-T therapy
What happens to the body if you are MRD negative and keep taking imbruvica?
CLL is gone!!!!
