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CLL Support Association
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Call patient apt 199trial

Hi I have been trialling a new anti cancer drug apt199 for cll at CHRISTIE hospital in Manchester I'm now in remission after three weeks it amazing

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That's wonderful news! Long may it last.

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Congratulations; always good to have another one in the pipeline. We need some competition to get these costs down.

May I ask, are you taking it as a monotherapy or in combination with a monoclonal, etc?

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No I take it on its own I hand no side affects and dose not suppress your immune system ithe drug was staged up like20 mill one week then every week till I got to 400 mills on week one after for hours taken 20 mills it was killing the cancer cells prity amazing isn't it never looked back and have no problems with it

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That's brilliant!!! There's hope for the future after all.

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Hi dou123,

Wonderful news and long may it last. May I ask a little about your circumstances, as I'm fairly local and wondering what this means for those of us in the North West. I'm 48, male, on six months W&W so far. For instance, what treatment have you received beforehand, how you got on the trial? etc.

Many thanks

Regards,

zentangle

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Hi no treatment before hand I had lukemia back in 2011 had rtuxemab took it away for 18months then it came back treatment again this time campath with steroids only did not work as well so down for bonemarro transplant at Birmingham hospital then I have phumonia I went in to Stoke hospital had antibiotics as I was coming out my Dr told me about a trail in Manchester and like I said never looked back but no guarantee how long going to work but if it dose then helpful the rest of my life but although I trailed it knowing it did kill two people in America I was also trailing it for outhers to and I hope it gets marketed soon but with the government we have at the moment it will be a miracle thank you for reading and good luck everyone who as cll

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Lovely to hear some good news.

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What is apt199? I'm guessing the "name" of the drug? So happy for you. Fantastic news. Did you notice that you actually feel different now? I mean symptom free? The only thing I feel on watch and wait is a slight soreness in my neck but it would be wonderful to be free of it since it is always there. Please keep us informed on this trial and how you and others are doing.

Kathy

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I think venetoclax/ABT-199 was what was dou123 intended to say. It's a very potent CLL drug that needs to be carefully administered, particularly in patients with a high CLL tumour load. Several brave patients lost their lives during early trials on this drug when researchers were trying to determine the best dosage. Venetoclax kills CLL cells so rapidly, that the potassium released from the dying CLL cells (i.e.. Tumour Lysis Syndrome) can stop your heart. Read more about this exciting new drug here:

healthunlocked.com/search/a...

It works on a different cell pathway than Ibrutinib and Idelalisib and could perhaps provide a cure with the addition of other drugs effective against CLL

Neil

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If I may Neil...Actually it has nothing to do with B cell receptor... it kicks the ass of a B cell mitocondrial surface protein that stops the B cell from dieing...appoptosis... so it returns a balance to the malignant B cells...

returning anti and pro appotopic ...

Genentech the maker of ABT-199 has a great video...showing the processes...

biooncology.com/pipeline-mo...

BCL2 has been around since the mid 2000s...hopefully this time it gets to market...

en.m.wikipedia.org/wiki/Bcl-2

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I love that explanation.

Jeff

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Thanks Neil,

I so wanted an explanation of the drug dou123 was taking and there you were! So interesting. Feels like progress but I am sorry for those brave souls as you say. I am grateful to you for the many ways you help us.

Kathy

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yes no simtins I'm fine no side affects dose not surpess your immune system I feel fine and we'll again

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Awesome you are a lucky duck!

Kathy

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That's great News and as a fairly new CLL patient at The Royal it brings me hope for the future. I'm very happy for you

Loran.

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