CLL Support Association
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Clinical Trial

Hi guys, I've been selected for the Ibrutinib/Venetoclax trial. I'm just waiting to be "randomised" for whatever treatment I end up with. Must admit I'm getting a little bit anxious about it all.

On Wednesday I'll have my BMB, not the most pleasant of procedures but I've had it before and I know what to expect.

Is anyone else here part of the trial and if so, how are you coping with it?

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Where is the trial? Blest Wishes for you!

Linda

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Hi Spacee, the trial is in Scotland

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Thanks, Daveyo. Hope you get the meds and it goes well for you. Keep in touch!

Spacee

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Sounds brilliant, good luck!

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Hi,

Just wondering exactly how it is randomised? Do you get either Ibrutinib or Venetoclax? I was on a trial last year but unfortunately pulled the FCR arm and not the Ibrutinib. I'm in Scotland too. Would you mind telling me where the trial is running? You could private message me if you don't want to share this information publicly.

Thanks

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It's at monklands hospital, north Lanarkshire.

I think there is 4 different options. I+V, Ib, I+R or FCR. The computer selects which one, a lottery basically

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Thanks Daveyo. Just thinking ahead to when I need treatment again which hopefully won't be for a very long time!

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Forgot to say good luck with the trial. 🙂

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Thanks Kenn, I'll post updates on my progress. All the best to you 👍

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Hi Daveyo,

I wish you lots of success on this promising trial. I started on a trial like yours, with Ibrutinib and Venetoclax in the Netherlands, some 5 months ago. Doing well. See my bio for more info. Let your team know you are anxious. They can anticipate on that. I guess we are all anxious when we have to face treatment.

Yvonne

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Thank you Yvonne

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Hi I started trial on 2 January I was lucky enough to get ibrutinb/venetaclax arm been clinic today and after last week wbc went up to 370 this week it came down to 343 so going in right direction no bad side affects to report hoping it goes just as smooth when venetaclax added already told me I will be staying in a few days with first dose . Hope goes the same for you . I'm in the midlands UK

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All the very best of luck to you

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Best of luck to you.

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Thank you 😊

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Hi I am being screened for the FLAIR trial next month. Good look keep us informed of your progress. It is normal to be anxious when facing treatment I feel the same. I will keep the community informed of my progress too.

Ann

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Thanks Ann, the Flair trial is what I'm a candidate for, just don't know which treatment it will be yet. It's so convoluted lol

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I hope to be more informed in 4 weeks time so will keep posting. Good luck.

Ann

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What does 'randomized' mean? I am in a trial for Ibrutinib/Venetoclax but nothing about it is randomized as far as I know. I started Ibrutinib for 3 months prior to starting the Venetoclax. This week is my last week for the ramp up and I don't know what to expect after that but am doing fine. I was treatment naive prior to starting on the trial.

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Randomised is basically what treatment the computer chooses me for, because it's a trial, I can be selected for one of four different options. Just the luck of the draw I suppose

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I guess the trial that I'm in was specific for the two drugs I'm taking. Best of luck with your journey.

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Looks like a few of us here taking I+V on various trials. It works really well!

I have to travel interstate for my trial and overall, it's been a pleasant experience (bit bizarre for a cancer treatment!) - no real side effects and regular overnight trips away, expenses paid by Abbvie, to check out another city. I've also racked up enough frequent flyer points for a ski trip to Japan in a few weeks.

Dave - whichever option you get, at least you get treatment by the best specialists and much closer monitoring than if you weren't in a trial. I'm not sure about your trial, but in the one I'm in there's also fallback options provided in case you progress on the initial treatment provided.

Graham

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That's fantastic Graham, sounds like it's a real success for you. Can I ask, do you still work? If so are you able to manage ok with it?

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Hi Dave

I feel fine and still work full time. I had 9 weeks off work while doing the Venetoclax ramp up but could have worked (other than for Dr visits and tests) if I had to.

Prior to treatment I was getting some fatigue but this went within a couple of months of starting treatment. I might still be a little down on energy (5%?) but nothing that stops me doing whatever I want. I haven't been getting ill much at all either.

One thing I have noticed is that I can't drink too much at the moment or I do feel rough. A couple of beers or wines is my limit now - probably a good thing. This might be because my liver is busy clearing out 2 different medications each day?

I can recommend keeping up exercise and drinking lots of water no matter what treatment you get. These are both really important.

I'll be interested to hear how you're going.

Graham

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Wow! Sounds like your doing amazingly well. My only real worry is having to take a lot of time off work.

As for the fatigue, I've been living with it for the last 8 years, so I can deal that I think. More power to you Graham, onwards and upwards!!!

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