CLL Support Association
9,279 members14,653 posts

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...

1 like
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No experience of this, just wanted to say good luck

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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!!

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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 ?

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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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