CLL Support Association
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ABT-199 plus Obinutuzimab

Finally remembered my login! Just a quick note to let you know I started the trial today at Barts (very very lucky to be on it!) - will be blogging specifically on this journey to help any of you who may be considering it down the track. You can find it at abtandme.com.

Best wishes

Deb

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Great to read your post. Please keep us all informed of your progress and all the best in your 'adventure'. BTW a PICC line just the thought of it freaks me out too! lovely pics you posted too xx

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Deb, wishing you well. Had a first look at the blog and adding it to my reading list.

(Sorry you've arrived for the miserable UK winter).

Rob

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Hi deboznowinLondon

Thanks for the sharing of your journey with us. I had been wondering how you were doing. I will be following your blog and wishing you strength and

continued support to help you through the treatment.

Hope the treatment road will not be too bumpy.

Bubnjay1

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Hi Deb,

Sending lots of good wishes for your treatment, I am a fellow Melbourne CLL sufferer. Will be following your journey with great interest 😊

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Thanks Heather - there is a version of this trial randomised against chlorambucil for treatment naieve in Melbourne. Hope you're still in watch and wait but it's worth bearing in mind if you're heading towards treatment.

Best wishes

Deborah

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Good to hear from you Deb and to learn that you've finally been able to start on what initiated your long journey. This should prove a very promising combination, considering both Venetoclax/ABT-199 and Obinutuzimab/Gazyva are both fairly active against CLL, particularly the ABT-199.

Hoping for awesome results for you from that one-two punch,

Neil

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Hi Deb,

Just wanted to wish you the very best of luck. I will be following your blog as well. Thank you for being part of what will hopefully be a very successful trial.

Regards,

Nan

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Hi Deb,

Here's wishing you the very best for your treatment. And I'm looking forward to following your blog. As I get closer to treatment myself, I am considering similar trials in the U.S.

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Thanks for posting Deb. I wish you all the luck in the world. Look after yourself.

Sue.

P's read the blogs

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Good luck Deb - hope it all goes well.

NooNoo

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Amazing to come half way round the world for treatment, but so glad that you have found this trial. I know that it takes some management in the first few months but I'm sure that the trial team have prepared you well.

The right mental approach is vital in this situation and you have it in spades.

We all look forward to following your progress and send every good wish for a successful result.

Tricia

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Thanks so much Tricia and everyone else for your support - it means a lot x

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Deb,

I wish you all the best and thank you so much for your blog.

Best wishes, Steve

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Hi Deb,

It is very interesting to follow your treatment by reading your blog, especially because I am (for almost three months now) on a trial ABT-199 in combination with Rituximab. Untill now, my results are very promising.

Wishing you the very best for your treatment!

Korstiaan (the Netherlands)

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Thanks Korstiaan - funny you should send this now - I was just showing my Mum a video of one of the Drs from the Royal Melbourne Andrew Roberts detailing the early results of your trial recently - it's very exciting.

Here is the link in case you haven't seen it

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Thanks for sending me the link. I have seen this video before, but I now got the chance to watch it another time. This presentation is about phase II. I am attending phase III, to which dr Andrew Roberts is reffering in his last slide (ABT-199/Rituximab in comparison with Bendamustine/Rituximab).

Best wishes,

Korstiaan

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Hi Deb, Happy to have an update from you!

I'm finishing up last 2 cycles of the ABT199/GA101 Trial in the US.... YAY...then I will be done officially with the trial. I started with GA101 then at week 3 of treatment I started ABT199. For me this trial has been fabulous ! I'm 13q and have been called the poster child for my good results, I was with 2 other patients that were 11q and they did very well also. I wish you the very best and I'm excited for you also !!

Saying prayers for you and sending hugs !

Denise

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Wonderful news Denise - do you know how close you are to a complete remission? I'm presuming, like me, you won't get another BMB until the 6 months point. Thanks for updating us too x

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Hi Deb,

Thanks for the blog link. I start a frontline clinical study in Oregon on Monday. It's obinutuzumab plus Bendamustine, so your blog on your first day helped me process the possibilities of day 1. I'm so glad you are responding well to your treatment!

Rosie

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Oh good luck with that Rosie - that will be a great combination! Make sure you drink lots and lots of water - I drank

about 2 litres before we even got going and added another 2-3 litres while being infused. I wouldn't eat too much either before the infusion starts just in case - I think that made my nausea worse. Once over the initial reaction it was all smooth sailing and I'm thrilled with the results.

Cheers

Deb

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Water drinking & bathroom trips are on my list for most important things to do starting day before cycles until after. Smooth sailing I hope!

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All the best. Look forward to the updates. Peggy.

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Dear Deb,

Your blog is wonderful. The enthusiasm in your voice is utterly contagious. I am amazed at the pictures of your disappearing lumps too!

If I could send you a picture, it would be of a 'pirate mouse' on her ship with her sword raised in triumph.

Keep writing,

Love from 'Jules' across the lake - Queensland, Australia. xxx

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Dear Debbie,

thank you so much for your story. I also suffer from CLL. I am on a trial -Idealisib-

I am also interested in ABT-199. I was invited to take part in ABT-trial in Koeln-Germany.

The ABT-199 trial was not available in March 2015 in England.

I do wish you all the best. I hope that we shall meet up one day to compare notes.

Love

Emma

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Hi Emma,

What Idela trial are you in?

Jeff

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Hi Jeff

I am on flair trial

kind regards

Emma

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Hi Emma,

Doesn't the Flair trial use Ibrutinib not Idelalisib?

Jeff

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