After taking both drugs for about the last year - as shown in the picture. I am now on the next phase being randomized today for either imbruvica or a placebo of imbruvica.
I went into this arm because I was tested and I am MRD negative in the bone marrow .
By definition I cannot tell what I have but I think I will know quickly based on the side effect profile .
I am a bit concerned if I get the placebo that my CLL could come back relatively quick even though I am am already MRD negative in the bone marrow. My disease was very aggressive before I started the trial .
I was only on watch and wait for a year after diagnosis and my no it’s got very large .
Imbruvica is the gray one and Venetoclax is the tan one below in the picture.
Overall it has been a very good year and three months. My side effects have been not too bad some fatigue some slight stomach issues and brittle nails and fingertips mostly.
Ucsd has told me that many people who were on Venetoclax have gone at least a year without needing treatment again . Hopefully with the addition of imbruvica there will have even a deeper remission.
I will keep you posted!!
Be well!,
Hoffy
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Hoffy
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Congratulations on MRD negative bone marrow. I hope you were doing the happy dance when you heard the news. Good luck with the rest of the trial and keep us updated with the results. Sally
It's so comforting to have a site like this, with people in the vanguard like you, pathfinding for us. I'm now a year into Venetoclax after just over a year on Ibrutinib. Also experiencing some fatigue, but then I'm 77 next month! Otherwise Fit and well and looking forward to my 100th!
Hope that all goes well in your next part of the journey, especially if you are on a plecebo, and it works well.
I'm only a few days behind you - I have my randomisation appointment on Tuesday. The trial coordinator told me yesterday that I'll be on the Ibrutinib or placebo arm - yay I'm joining you in the I+V MRD- club!
I'm hoping for the placebo but will be happy either way. It would be good to be treatment free (hopefully for quite a few years), as the I and/or V are meant to work again if we need it.
I am in my first month of randomization as well. I won't get labs for 3 months. I also worried about being on the placebo, but figured I would go back on them if it comes back. I still feel about the same. My side effects were not that bad. I am first line treatment and hope to get many years. I guess we will see what happens when they finally release some data. I hope they do at the next ASH. I hope this combo cures some folks.
Glad to see another where I am. This morning I did not feel as fatigued. Did yoga over lunch and I had a lot more energy. I think I am on the placebo. But that might be good because I can see how I feel on and off the drugs to compare.
BTW- You can request to get your blood checked before the 3 months just for your peace of mind,
Wishing you well! I have discussed this with my doctor. I told him if I was randomized in December, I would definitely know if I was on the Ibrutinib or a placebo. He just grinned and said, that most people would be able to tell if they stopped the Ibrutinib; however, since the testing is so objective, he doubts anyone’s marrow or blood results would be affected by just “knowing” they were or were not taking this drug.
You who are on this trial have my deepest respect. I know there has to be a certain amount of anxiety (stress) from the changes you have made from one med. to another, and now another change.
Here's hoping for an uneventful transition from one regimen to the next and a long non-progression. Your journey is of the most interest to us all.
Wonderful news. I hope that those on the placebo sail on through life and that this is a combo that will allow patients to go off daily meds and restart as needed.
hallo Hoffy, congratulations on your good results. I have been on Idealisib for past 24 months my blood results are ok. As I understand you had a bone marrow biopsy. Was this done under local anasthetic? was is painful? please let me know. Thanks Emma (I do live in England)
I am so excited for you, Hoffy, and many thanks for all your posts updating us with your experiences on this trial. I'm feeling very positive thoughts for you, Mr. MRD negative!
I know someone whose husband has 17p, and became extremely ill and had to be hospitalized. He was treated with ibrutinib (only) in 2016 for less than a year and had to go off due to side effects. However, when he went off, his counts were within normal range and stayed that way for about a year. When they did start going up, it was minimal - they did not increase quickly. Last time I communicated with her earlier this year, his counts were still stabilized. Of course, this is only one person's experience but it was something we considered when my husband agreed to participate in the ibrutinib/venetoclax fixed duration cohort. Giving your body a rest from the medication and restarting at a later time, if needed, is definitely something we considered.
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