Update on my participation in an ABT199 clinic... - CLL Support

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Update on my participation in an ABT199 clinical trial

Brian_nwIL profile image
10 Replies

I've been in a trial for Abt199 and Rituxin , did I spell that right, since last June or so , with no side effects that i can tell , life is normal.

The good news is that it appears I'm in full remission , I will hear more about it from Dr Ma tomorrow at Northwestern in Chicago.

Previous history is that I did some sort of chemo routine 5 years ago , went into remission. Things started to go the wrong way about a year ago, I signed up for the ABT trial, here I am looking pretty good.

I'm sorry that I can't get more technical for those that understand the lingo, email me questions and I'll get answers tomorrow .

The whole CLL thing has never slowed me down much , when I read about the various symptoms and effects re my companions here on this journey I feel lucky to have gotten off so easy , it's like I got the million dollar wound, get to go home and not face , hopefully , battle again .

The take away from all of this is that from the very beginning , my Dr at the time at Northwestern , Dr Rosen, was very optimistic about the various options available then and in the future. The future arrived in the form of ABT199 right when I needed it.

The pipeline of treatments appears to be getting larger all the time , when I read about YOUR experiences here, those just diagnosed and those that are veterans , i pray and hope that there are options that fit your situations and provide for you the same results I am experiencing .

The future ? I plan to stay active and fit , make some improvement in my eating habits, less sugar , more veggies and fruits.

I will finish the western part of my cross the US bike ride picking it up at the south rim of the Grand Canyon and head for the WY/NE border near Pine Bluff WY.

The boat is behind schedule , I still plan on doing the Singlehanded Newport to Bermuda Race in June, then head to the P Canal so I can do the Solo TransPac in '16 with a little whale watching and Galapagos in between.

And if time allows and the opportunity presents itself, climb Denali in there somewhere too.

There you go, knock on wood, an ongoing success story , you can do it too.

Brian

Pic- summit at sunrise , Kilimanjaro a few weeks ago

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Brian_nwIL
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10 Replies
Newdawn profile image
NewdawnAdministrator

How wonderful is that Brian! Life is for living and you certainly seem to be seizing yours and running, jumping, cycling and sailing with it!

Brilliant news and long may it continue.

Newdawn

splashsplash profile image
splashsplash

Thanks so much for all that ABT-199 positivity, we all need it and your attitude to the new lease of life you've been given is really inspiring. Please keep posting.

nvp815 profile image
nvp815

Congratulations on the wonderful success you are having with ABT-199 Brian. It is posts like yours that give each and everyone of us reason to smile and be hopeful!! I am rejoicing with you and wishing you many more exciting adventures ahead. - NVP

alexmcg48 profile image
alexmcg48

This sounds like a good news story & should give hope to all of us just starting on the journey. Good luck to you & long may it continue.

dou123 profile image
dou123

I'm my name is Doug from the uk I to trialed abt 199 on its own in Manchester I had all with 17p been in part remission take 400mills every day and I call it a mircaldrug iI'm in full health now back at work and know side affect s so yes a brilliant drug let's hope it goes on the market so other people can benift to thanks Mr d Clarke England

dou123 profile image
dou123 in reply to dou123

Ment cll

PaulaS profile image
PaulaSVolunteer in reply to dou123

Hi Doug, It's great to hear how well you're doing, specially good that you don't have any side effects.

Yes, we live in hope that ABT 199 (and others like it) will soon be available to everyone who needs it...

Best wishes,

Paula

PaulaS profile image
PaulaSVolunteer

Thanks for sharing your good news story, Brian. And you were on Kilimanjaro a few weeks ago!

Wishing you all the best for your future adventures... Maybe you'll post a photo of the whales next time :-)

Paula

dou123 profile image
dou123

Hi Brian I to trialing apt 199last April because my lukima came back its brilliant wot this drug dose I take it on its own every day no side affects I'm now in part remission hope to be in full remission soon and hope this Wii be available to all soon now that its been named good luck brain and wishing you all the best thanks doug

ChicagoDave profile image
ChicagoDave

Hi Brian - I also have Dr. Ma and was a patient of Dr. Rosen. Did CLL vaccine clinical trial last year. May need treatment in 8 - 13 months...

Glad you're enjoying life

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