Has anyone taken ibrutinib for cll p17 deletion.If so how did it go for you?

[Macyjo14]

[Lenny123]

Funny you should ask. 17 P deleted, wiped out, I completed 3 rounds of FRC,BMB repeated, marrow clear of disease. Am being worked up for transplant. On Ibrutinib, till then. Into it about 2 weeks, feel fine. Blood counts show backsliding Platelets of 109,000.

Hopeful, scared, uncertain.

[Macyjo14 in reply to Lenny123]

Thanks for replying,know the feelings.I hope everything works out well for you!

[Mikey47]

Hi Macyjo,

Sorry to have to welcome you to this 'club' but we do. You will find plenty of useful info here and many knowledgeable members.

I don't have the 17p deletion but I do have the 11q deletion and have been on the Ibrutinib/Imbruvica arm of the Resonate2 study since late September, at Bournemouth Hospital in the UK. The 11q deletion is notorious for bulky lymph and I had a very heavy tumour burden (abdomen, spine and chest) when I began the study.

A recent CT scan showed that my tumours had reduced by up to 50%. My enlarged lymph nodes in neck, axillae (armpits) and groin faded to nothing within a few weeks. Blood counts are edging towards the normal range again.

I do know that Ibrutinib/Imbruvica is equally efficacious in patients with 17p deletion. There is much literature on this and here is just one paper from onclive.com:

Ibrutinib Proves Effective, Regardless of 17p Deletion Status - See more at: onclive.com/conference-cove...

Hope this helps,

Best wishes,

Mikey

[Macyjo14 in reply to Mikey47]

Thanks for replying,very useful info.

[Explorer1]

I have 17 p deletion. I am currently taking Ibrutinib. I am amazed by how quickly it impacted on everything. Swollen nodes in neck, armpits and groin no longer detectable. Abdominal discomfort has also gone. No major side effects as yet. I am very happy!

[Mikey47 in reply to Explorer1]

Good to hear that Explorer1. Long may it continue.

[Macyjo14 in reply to Explorer1]

Thank you for replying to my post! It sounds very encouraging! I've only been through 1 round of FCR(6 months).I hope things work out for the both of us.Thanks again

[ThreeWs]

I have been on Ibrutinib for 31 months now but am not a 17p- patient. I talk with many patients and monitor the research and can say without reservation that Ibrutinib works well in all categories of CLL chromosomal aberration to include 17p-. There are some patients who relapse and I met one patient in the early Trial days that did not respond but your chances are overwhelmingly good for a good response. see link for data on response. <nejm.org/doi/full/10.1056/N...

WWW

[Macyjo14 in reply to ThreeWs]

Glad to hear,thanks

[DrLV]

Yes, for 18 months. Check out my blog: DrLaVerne.blogspot.com.

[Macyjo14 in reply to DrLV]

Couldn't get blog site.

[Cllcanada Top Poster CURE Hero]

Try this.. drlaverne.blogspot.com

there was a period in the link...

[bkoffman CLL CURE Hero]

I have done very well for the last 20 months with stable disease despite a small sub clone of 17p del. Also am 11q del., ZAP 70+, unmutated, and have a complex karyotype. See my blog: Bkoffman.blogspot.com. Ibrutinib is a strong choice for 17 p