Unsure and a little nervous

Well I have been on ibrutinib for over 4 1/2 yrs now and I guess my body has started to become resistant to it.I was told when I started it would probably be around 2 yrs if it was going to do so, at the 2 yr mark I felt blessed and that I had this even though I'm high risk so now they want me to go on combination study of ibrutinib and ABT - 199 anyone else out there doing this ?

6 Replies

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  • Granny12,

    Read my post.

    Jeff

    bloodjournal.org/content/12...

  • No experience of this, just wanted to say good luck

  • Hi Granny12,

    There are atleast 5 regular contributors to this group on trials combining Ibrutinib and Venetoclax, several have reach MRD negative and are stopping treatment after 12 to 18 months without progression.

    If you look at the far upper right corner of this page - there is a box marked "Search CLL Support Association" then enter "Venetoclax Ibrutinib" you will get a long list of postings and discussions on your exact subject.

    Below are examples- but if you do your own search there will be embedded links you can use to view each thread.

    BCTexas

    Ibrutinib / Venetoclax

    BCTexas in CLL Support Association 4 months agoPOPULAR

    Hi my fellow CLLr's I need some feed back. I just had my 3 month visit to see my Oncologist at M.D. ANDERSON and I'm very confused on what I...

    76 Replies

    ___________________________________________

    Mcpill

    Switching from Ibrutinib to Venetoclax

    Mcpill in CLL Support Association 3 months ago

    For those who have made the switch, did you need to take a break from ibrutinib before starting the Venetoclax, or did you just make the tr...

    4 Replies

    ___________________________________

    jtaeross

    Moving on to Venetoclax after Ibrutinib

    jtaeross in CLL Support Association 7 months agoPOPULAR

    I'm on day # 2 of Venetoclax.3 GLORIOUS years on Ibrutinib before signs of relapse.57 female - 1st grade teacher17pUnmutated

    36 Replies

    ___________________________

    thompsonellen

    First Day of Obin, Ibrutinib, Venetoclax Trial at OSU

    thompsonellen in CLL Support Association a year agoPOPULAR

    Hi,I respond several times a week to other posts, but having written one. I am participating at the OSU trial and since I've benefited from ...

    26 Replies

    ________________________________

    lukejensen27

    Starting Ibrutinib plus Venetoclax Trial at MDA

    lukejensen27 in CLL Support Association 5 months agoPOPULAR

    I will be starting the Ibrutinib plus Venetoclax trial at MDA. My platelets have dropped from around 150 to 28 in just a couple of months. M...

    68 Replies

    _________________________

    thompsonellen

    Cycle 3, Day 1 and 2 of Obin, Ibrutinib, Venetoclax Trial

    thompsonellen in CLL Support Association 10 months ago

    I'm back from Columbus again. Cycle 3 is when they start administering the third drug, venetoclax, to the trial participants. They required ...

    4 Replies

    _________________________________

    thompsonellen

    Cycle 8, Day 1 OSU Obin/Ibrutinib/Venetoclax Trial Update

    thompsonellen in CLL Support Association 5 months agoPOPULAR

    I hope everyone relaxed during the holiday season, and that you are all enjoying getting back to your daily routines.This past Tuesday, I ha...

    25 Replies

    ________________________________

    thompsonellen

    Cycle 5, Day 1 OSU Obin/Ibrutinib/Venetoclax Trial

    thompsonellen in CLL Support Association 8 months ago

    Hi,Just got back from my Day 1, Cycle 5 trip to OSU. 4 cycles down, 10 to go.Day 1 of the first 8 cycles involves the obinutuzumab infusion ...

    9 Replies

    _________________________________

    bkoffman

    Dr, Jeff Jones on venetoclax after failing ibrutinib or idelalisib

    bkoffman in CLL Support Association 10 months ago

    Hi,I’m sorta back in the swing of things and have partially caught up on sleep finally.This week in the Conference Coverage section, we’ve p...

    4 Replies

  • i am glad ibrutinib gave you a good run, long enough that there are some great options to turn to. you've got this. best wishes!!

  • I am on a Venetoclax plus Ibruvica trial. I am doing well so far. My WBC is down to 2.1. Venetoclax is strong on the CLL with out many side effects. Doctors just have to make sure it is ramped up slowly. It dropped my WBC in half on just 1/20 of the regular dose.

    I am 17p deleted and thus high risk.

    What is your genetics ?

  • I am on I+V as well. A few side effects from Ibrutinib, but nothing when the V was added. I hope you can get into a trial or get the V added.

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