ACE CLL- 311 Update Acalabrutinib Venetaclax

[Yidarmy69]

Hi everyone I’ve been on this trial since October . I had a CTt scan last week got the results today all of my noades are now normal size bloods all good the best news is I’m in remission got to carry on taking the tablets to hopefully get a deeper remission .I will have a BMB in a few months to see how my bone marrow is 👍 there is hope out there for us all .

[Canuck901]

How have been tolerating both ? Full dose of acalabrutnib ? 2 pills , how many mg ?

And are you on full dose of Venetoclax as well 400?

Thanks for sharing your experiences,

Glad to hear of the excellent response to

Treatment

[Yidarmy69 in reply to Canuck901]

Hi I can honestly say all I had was a headache for a day and I was sick once on alcabrutinib on venetaclax on 400mg a day no side effects at all and thank you

[Jackpot]

Wonderful news! I am so happy for you. I am in the same trial, on the same combination as you, and am amazed at how quickly these drugs work.

Thanks for sharing your great news. It gives the rest of us lots of encouragement.

Cindy

[Yidarmy69 in reply to Jackpot]

Hi I agree it does give hope to others who have got CLL let’s hope this goes along to finding a cure

[Root65]

That is very quick and good results, and relatively painless which is a fantastic outcome. Definately seems the way for the future, hopefully it will be the norm soon. Thanks for the up dates 👍

[MystyUK]

That's amazing, really pleased for you and so quickly 🎊🎊

[Yidarmy69 in reply to MystyUK]

Thank you hope you get to same as me 👍

[MystyUK in reply to Yidarmy69]

So do I🤗 I'm keeping my fingers crossed 🤞

[studebaker]

That is fantastic result after such a short time 👍🏻

Good luck with continued treatment.

Is this a time limited treatment?

Dana

[Yidarmy69 in reply to studebaker]

Hi yes altogether it’s 14 months it was supposed to be 3 years but I think they are concerned if we continue for that length of time we might become resistant to venetaclax but I’m not really sure just yet hope this answers your question

[AussieNeil Administrator in reply to Yidarmy69]

The initial trial schedule was designed before we knew how quickly people would respond on the combination treatment. There's a very similar protocol in a Dana Farber trial. Trial results showed no further improvement after a year on Venetoclax, with some patients actually showing less of a benefit. So it made sense to reduce the trial length and see how patients go when off the treatment drugs, which, after all, do suppress bone marrow function.

Neil

[Hoffy]

Great. Where is this trial location. I am on I plus V but A plus V even be better. Less side effects... maybe.

Be well,

Hoffy

[Yidarmy69 in reply to Hoffy]

Morning I live in Kent in U.K. trial is in Canterbury only 15 miles from my house hope this helps

[Hoffy]

Great!

Hoffy

[Yidarmy69]

Thank you

[Canuck901 in reply to Yidarmy69]

How’s things going for treatment ? Are you stiill on acalabrutnib and Venetoclax full dose ? Where you given Obinutuzumab infusions?

[Yidarmy69 in reply to Canuck901]

Hi my treatment is going brilliantly I still haven’t had any side effects I am now in remission but not had another BMB that was by blood test . As for adding Obinutuzumab my arm of the trial wasn’t given this but I am over the moon the way things are going have another 6/8 months left on trial thank you for asking hope you are well and staying safe

[Canuck901 in reply to Yidarmy69]

So your arm was Strictly just A + V?

Glad to hear you’re doing very well . Any side effects with fatigue or joint pain or anything else ?

Thanks !

[Yidarmy69 in reply to Canuck901]

Hi I have had no side effects at all I had apart from a headache which I don’t know if this was just a headache or side effect thanks for asking stay safe

[nozha13]

Hello Yidarmy. I'm on the same trial. My last Ct scan showed 2 nodes still slightly larger than normal. I've had no side effects with this trial save for a couple of headaches at the beginning. However after 10 months, my neutrophils have dropped to .8 for the first time. They have taken me off the meds for a week to see if they recover. If not, they will halve the medication. Aside from that my hemoglobin, platelets and lymphocytes are normal. I feel very good and hope for a deep remission when the trial ends in July. Happy to hear that you are doing great. We're lucky to have this trial.

[Yidarmy69]

Hi since starting my trial I have had 1 scan which showed noades and spleen all normal so far my neutrophils are ok I spoke to lily pad master who is on out trial but is on O as well he said low neutrophils is a common side effect of venetaclax he is very knowledgeable I hope you continue to be healthy on this trial stay safe I’m in U.K. keep in touch please

[Canuck901 in reply to Yidarmy69]

How’s your treatment going Yidarmy69?