CAR-T update and more: Hi, Been busy and tired... - CLL Support

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CAR-T update and more

bkoffman profile image
bkoffmanCLL CURE Hero
47 Replies

Hi,

Been busy and tired, trying to get ahead of what I need to do while spending many hours at the hospital at the Seattle Cancer Care Alliance (SCCA).

Writing this with fludarabine and cyclophosphamide running through my PICC line to make room for the CAR-T cells on March 22.

I have tried to keep the CLL Society website up to date with weekly reports from ASH. Last week it was an interview with Dr. Con Tam (cllsociety.org/2018/03/ash-... on BGB-3111 or zanubrutinib (yet another name we have to learn), a more focused BTK inhibitor similar in some ways to acalabrutinib.

I have also been blogging on my personal CAR-T journey (cllsociety.org/car-t-blog/). So far so good, nothing too difficult other than some mild GI issues, but the real fun begins when the CAR-T cells start expanding after may infusion

Stay strong.

We are all in this together.

Brian

cllsociety.org

bkoffman.blogspot.com

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bkoffman
CLL CURE Hero
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47 Replies
Newdawn profile image
NewdawnAdministrator

Huge best wishes for your treatment Brian.

Newdawn

Ashmom profile image
Ashmom

Asking the universe to send you good vibes, Brian.

Ash

UK-Sparky profile image
UK-Sparky

You stay strong too Brian

UK Sparky

Justasheet1 profile image
Justasheet1

Doc,

I know that God answers all prayers. Sometimes, the answer is no. We are all praying the answer is YES!

Jeff

EugeneL2 profile image
EugeneL2

We are all rooting for you to have great success with CART therapy.

cllady01 profile image
cllady01Former Volunteer

Dr. Hoffman, we are all indebted to you for your faithfulness in taking your treatment public, for your continued communications that give us the information we need to see that the fight to find what can be the treatment of all treatments for CLL.

Since we have learned as we go that this leukemia is not the same in any of us, there may need to be several curing treatments developed to fit the variables.

Thank you, and may this treatment be the one for you.

JR1964 profile image
JR1964

Take care Brian, keeping you in my thoughts and prayers. STAY STRONG J.R.

pkpayne profile image
pkpayne

You are such an inspiration. I always look forward to reading your posts.

Paula

FlaKeys profile image
FlaKeys

Sending all of my best wishes and thoughts your way! Your inspiration to others is a blessing!

Thanks for sharing your journey with HU. I continue to learn so much through your posts. Prayers for success with CAR-T. Sally

CADreamer profile image
CADreamer

God be with you in your new journey to win this battle with CLL. With all you have done for for your CLL Society members, it’s time you be rewarded.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Risking a trial with Ibrutinib gave you time for researchers to develop this trial. I so hope this is the one for you, Chris M., Debbie, and everyone else I don't know in there with the three of you! Sending lots of positive thoughts to you from sunny / rainy Southern California!

CCLandwell profile image
CCLandwell

❤️

dmmck profile image
dmmck

Wishing you the best. Your posts have helped me stay strong.

seoul profile image
seoul

It sounds like a coming succes, I am sure. Viel Glück und alles Gute. Ich drücke die Daumen.

Bubnojay profile image
Bubnojay

Sometimes we forget to tell our pathfinders and pioneers on this CLL path how much they mean to us, many who follow silently along the way.

You so matter to the CLLers Brian, you are in the thoughts of many despite their own trials and traumas.

Hang tough, huge wishes for a successful outcome. Hope always.

Bubnjay1

Name-1 profile image
Name-1

Good luck Brian!

Stay strong!

terryI_uk profile image
terryI_uk

Good luck and God bless Brian, Terry

Wroxham profile image
Wroxham

My best wishes are sent Dr Brian.

Sue

Bixilon profile image
Bixilon

Desde Argentina le envio mis mas sinceros deseos de suerte y excelente recuperacion. Gracias por compartir su experiencia. Admiro su fortaleza y generosidad.

hsouter profile image
hsouter

Here is hoping that CAR-T is your answer!

I also hope for an answer for people around the globe—especially those in other countries with less access to specialized care....

Thanks for your contributions to the cause....

Heather

Pattyannie profile image
Pattyannie

All the best to you! Thank you for sharing this journey and knowledge with us. You are a very special person!

Kokobean profile image
Kokobean

I’m praying for you!

wmay13241 profile image
wmay13241

March 22 will become your new birthday from which everything will be measured. I wish you much success on your journey.

vila profile image
vila

Good luck Brian! Wishing you the best!

pilantd profile image
pilantd

Wishing you the very best.

Mystic75 profile image
Mystic75

We are rooting for you every step of the way. Thank you for all you have done, especially in the way you have done it.

Our human limitations provides each of us many challenges, whether it is dealing with CLL or any number of issues we deal with in our lives, yet you have the ability to envelope this with a human spirit full of grace and gratitude, which is so inspiring.

All the best to you, Dr. Koffman!!

june65 profile image
june65

Best of luck for the 22nd Brian.

Keep the faith, June

Cindi73 profile image
Cindi73

We haven't the pleasure. But wanted to thank you for sharing your journey. My thoughts and prayers for a successful outcome. God bless. Cindi from Pennsylvania US.

DebKat999 profile image
DebKat999

Dr. Koffman, from the day after I was diagnosed not long ago, I began to read each of your posts. I have been informed, encouraged, and inspired by each of them, and I thank you.

I want to join everyone in letting you know how much I too am rooting for you, I wish you wonderful success with this treatment.

Debbie

Fran57 profile image
Fran57

Thanks for all the information so far... looking forward to lots more. Hope all goes well!

Fran 😉

Ladydi49 profile image
Ladydi49

Praying for you and wishing you the best on your journey....keep us posted

Sending warmth and sunshine from Florida...

Best regards,

Dianne

Peggy4 profile image
Peggy4

Thinking of you Brian.

Peggy 😀

SMS-not-cll profile image
SMS-not-cll

Sending strong hopes and good wishes for success from your treatments, Brian.

SMS-not-CLL

gnlwood profile image
gnlwood

My best wishes to you Brian.

Ladydi49 profile image
Ladydi49

Hello Dr Koffman....hope the CAR-T works for you. I just got through reading what it is, how it works and side effects the latter of which can be mild to life threatening and death...all kind of scary so when I say my prayers every night I'll say a special prayer for you....curious as to what your markers/ mutations are which you can private message me if you care to share. Also does one have to fail all other treatment modalities before going the CAR-T route?

Best regards,

Dianne

Ozziebee profile image
Ozziebee

Sending you kind and supportive thoughts Brian!

tpetro profile image
tpetro

Brian

Thinking of you and yours...wishing you the best outcome and sending good vibes your way... Stay Strong... We are all in this together!

Terry

Lola69 profile image
Lola69

Big hello from Montreal , Quebec!!

Elliot43 profile image
Elliot43

Bit of a journey you're on there Doc... Hoping for a great outcome.

All the very best

From Sheila in oz

cook4650 profile image
cook4650

Wishing you all the best, Brian. You are the 2nd one of my online acquaintances who is on CAR-T.

annmcgowan profile image
annmcgowan

All the very best Brian.

Ann

Jaan17 profile image
Jaan17

No words can really explain how much of your posts, and what you do mean to all of us going on this CLL journey. We all wish you the best & great outcome.

Jaan 17

jaysearch profile image
jaysearch

I am a newbie to this forum, but reading all of the posts sent back to you tell me you are an extraordinary human being. I will pray for your successful treatment.

Robgump profile image
Robgump

Brian, thank you for sharing your journey! I have one question, do you have any deletions?

Keeping you and your wife in our prayers!

bkoffman profile image
bkoffmanCLL CURE Hero in reply to Robgump

Thanks. 11q and 17p though mysteriously not confirmed on last BMB

Dawn-Marie profile image
Dawn-Marie

Wish the best for you!

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