I'm new here.

[Valour]

I'm 73 years young when I was diagnosed on November 14th, 2017 with CLL to include 17p del and will be participating in the A Phase IB Study of ACP-196 (acalabrutinib) in combination with obinutuzumab infusion also adding venetoclax at OSU in June 2018. The disease was found through an elevated white blood cell count and that was promoted by an unexplained weight loss and fatigue. Would be very interested in feedback from anyone.

[Jm954 Administrator]

Sounds like a good study to be part of that should give you every chance of a good remission. Good luck!

[Valour in reply to Jm954]

Thank you for your kind words and praying for that result.

[Oleboyredw-uk]

I’m on Ibrutinib, Acalabrutinib is a second generation and supposed to be better (less side effects I believe). Looks like a good route and I wish you well on your journey.

best, rob

[Valour in reply to Oleboyredw-uk]

Thank you and wishing the same for you. Yes from what I'm understanding it is a second generation and with less side effects and from what they say people with 17p del responds favorably for some time. Mapping a route and finding a path that leads to more pathways seems to be one approach to managing this disease. This is my impression so far. I really appreciate this site and the knowledge you all share with others.

[Spacee]

Hubby has same numbers as you. 70 yo. Told to expect treatment in 1-5 years and I believe there is a clinical trial for what you are taking at Moffitt in Tampa (where he is seen).

Blest wishes to you.

Linda (Spacee). (I agree you have a good chance for remission!)

[skykomish]

Welcome, Valour. I'm sorry to here about your diagnosis, but you are in good hands at OSU. The combination of obinutuzumab and venetoclax is very effective in 17p deleted patients. And the addition of acalabrutinib should be an even more potent combo. I am younger than you, and not 17p deleted. I received venetoclax + obinutuzumab in a clinical trial a couple of years ago and did very well. You have good reasons for optimism. Here's wishing you the very best of outcomes.

[Valour in reply to skykomish]

Many thanks and love hearing you responded well and had a good outcome.

[pkpayne]

Welcome to our group Valour. It sounds like you are in very good hands. I am in a trial that I started in late September 2017 with a combination of Ibrutinib/Venetoclax at M.D. Anderson. I am 13q, 11q, unmutated and so far have had no side effects to speak of. Best of luck on your journey and keep us informed of your progress. There are so many new treatments being offered today and many more in the pipeline.

[Valour in reply to pkpayne]

Thank you and so glad to be about of this awesome group. It's wonderful to hear your doing so well and will be watching for your updates as well. How long is your trial as ours will be 14 months. Is there a rule to how long a trial lasts? May this journey be short and your life long.

[pkpayne in reply to Valour]

I think my trial is for 2 years. At least I think that's how long I will be taking the Venetoclax. I did ask my doctor what we would do if this wasn't successful and he said not to worry - that he had other tricks up his sleeve. I am taking him at his word. May your journey be short and your life long as well! All my best wishes.

[Hoffy]

You are on a great study in my opinion. I am 17P deleted on I Plus V trial.

I am doing well so far after a bit more than a year,

Be well,

Hoffy

[Valour in reply to Hoffy]

That is great to hear. Is this your first trial and how long will this trial be? Wonderful to hear how well your doing it sure is what makes this site so uplifting. Thanks so much for posting.

[Hoffy]

This is my first trial. As far as I know as long as the meds keep working they keep you on the trial. The drug companies want to show how when the drugs work.

Brian Koffman of CLL Society has been on his trial for Imbruvica for over 6 years.

His site is very good,

Be well,

Hoffy

[Valour in reply to Hoffy]

Thanks! I'll check out Brian's site. Wishing you continued success with your trial and hopefully it's the only one you do cause it worked so good.

[Hoffy]

Sounds great. You too. !