Talking care of business

[bkoffman]

Lots of plans- had my annual checkup and labs including lipids and PSA and they are all good. Colonoscopy next week so off Ibrutinib 3 days before. Trying to schedule a BMB to see if U-MRD with Clonoseq so can go off ibrutinib.

Renewing Medicare with all the associated questions.

The weeks before ASH are crazy busy, so I need to keep my head down and push forward but as John Lennon said: life is what happens when you are busy making plans.

[may04cll]

thought you were off all meds due to your successful CAR-t ?

[bkoffman CLL CURE Hero in reply to may04cll]

Needed to be on 6 months post CAR-T to tweak the T cells, then stayed on for controlling my ITP. My docs have disagreed about going off, so the BMB will help me decide.

[Hoffy in reply to bkoffman]

Glad you are doing well. Someone i know who is at least 180 lbs or more switched to 1 Imbruvica a day. His WBC and numbers are all good but his side effects have gone away. I know it’s hard to say that it’s all good because it might not be working at his weight but maybe 1 pill is enough after on it for many years...??

Be well,

Hoffy

[Newdawn Administrator]

An important reminder to keep up with the other health checks in addition to the CLL specific ones.

Keeping busy obviously suits you! 😊

Newdawn

[bkoffman CLL CURE Hero in reply to Newdawn]

I get bored easily.

[Newdawn Administrator in reply to bkoffman]

We’d noticed! 😉 However, your boredom levels benefit CLL patients 👍

Best wishes for the tests.

Newdawn

[BeckyLUSA in reply to bkoffman]

I believe that is obvious! You make me tired just thinking about all you do!

BeckyL USA

[Tommays56]

Be well

I had no idea your were still on other meds when you visited Long Island

[Justasheet1]

Good luck Doc. I’m looking forward to your posts from ASH on the cllsociety.org/

Jeff

[pkguk2 Partner CLL Support Association]

Thanks for posting an update, Brian. Keep up the good work! Look forward to hearing about ASH.

[johnl]

Brian, Didn't you become resistant to Ibrutinib before CAR-T? Did that change after CAR-T?

john

[bkoffman CLL CURE Hero in reply to johnl]

Yes, I developed a PLCG-2 mutation.

[Justasheet1 in reply to bkoffman]

Doc,

Is the new drug I saw on Cllsociety effective against that mutation?

Loxo-305

loxooncologytrials.com/btk-...

Jeff

[bkoffman CLL CURE Hero in reply to Justasheet1]

The efficacy with the reversible BTK inhibitors of which there are several in development including vecabrutinib. LOXO-305 and others, is clearer for those with the more common C-481 mutations.

[Smakwater]

Lead the way Boss, and remember to schedule some Rest and Relaxation in the plan.

JM

[Hoffy in reply to Smakwater]

Yep!!!

[eggemma]

I wish you good luck. kind regards Emma Fleetwood

[Justasheet1]

Doc,

What is that link again for Amazon that allows a portion of the sale to be donated to Cllsociety?

Jeff

[Jm954 Administrator in reply to Justasheet1]

It's Amazon Smile

Jackie

[bkoffman CLL CURE Hero in reply to Jm954]

Thanks. That is correct.

[Justasheet1 in reply to bkoffman]

Doc,

My wife just unfortunately killed our bank account doing some pre-Christmas shopping on Amazon.

I’m happy to report that she logged in to

smile.amazon.com/

and put Cllsociety in as the charity recipient and everything went flawlessly.

Please keep up your wonderful work.

Jeff

PS- I just copied this from an email you sent out today:

“Have you started your holiday shopping?

Don’t forget you can support CLL Society at no cost to you! How? Simply type smile.amazon.com/ in into your browser and select CLL Society as your charity. Shop like you normally do, and Amazon will automatically donate a portion of the purchase price to CLL Society.

These small amounts add up, and we are so grateful for every dollar, which will help us provide important education and services to the CLL patient community.

Of course, you can always make a direct donation as well.

For those already donating through Amazon Smile, THANK YOU!“

[bkoffman CLL CURE Hero in reply to Justasheet1]

Thanks so much. sorry about the bank account, but very much appreciate the support.

[kathymac52]

You are always an inspiration to me....and I follow your progress with great hope....thanks for updating us with your progress. You are a warrior of great courage and faith

[bkoffman CLL CURE Hero]

Thanks