The CAR-T Killing Frenzy is Done: Time to Cele... - CLL Support

CLL Support
13,850 members21,772 posts

The CAR-T Killing Frenzy is Done: Time to Celebrate Being Cancer Free

bkoffman
bkoffmanCLL CURE Hero
83 Replies

Hi,

It’s been very very tough, but I got what I came to Seattle for.

MRD- negative in the blood and the marrow and nodes almost completely back to normal.

Cancer free.

It is wonderful news, but has come with some cost. Beside the pain and fatigue, I developed a small asymptomatic blood clot in the lung, so I give myself tow shots of Lovenox every day.

Small price to pay.

The details are on my blog: cllsociety.org/car-t-blog/

I am giddy with joy. Forget my own advice to under react. Not today. Tomorrow I will calm down. Today I am celebrating.

Stay strong.

We are all in this together.

Brian

cllsociety.org

83 Replies
oldestnewest
Newcastle1962

I have been following your story. Thank you for sharing you are an inspiration who gives hope to others. Wishing you all the best for your recovery.

8 likes
Reply
Dell49

Great news Brian, onwards and upwards 😎

5 likes
Reply
MsLockYourPosts

Fantastic! I'm so thrilled for you, Patty, and all of your family, friends, and extended CLL family. We are all relieved for you and celebrating for you, each in our own way!

10 likes
Reply
Murzik

This is an Absolute Victory in all aspects!!!!!!!🎵🎶🥁🥁🥁

7 likes
Reply
Jaan17

Brilliant joyful news. All & everyone here were praying for this & these have been answered. Cancer free - long, long, long may it continue and yes time to celebrate !!! Jaan 17

6 likes
Reply
Justasheet1

🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🥂🥂🥂🥂🥂🥂🥂🥂🥂🥂🥂

Congrats Doc, when you have faith anything is possible!

Jeff

8 likes
Reply
peas50

WONDERFUL! Absolutely brilliant news! Celebrate like crazy..you've earned it. :)

8 likes
Reply
Beattiem

You certainly deserve it! Enjoy every moment.

6 likes
Reply
PaulaS
PaulaSVolunteer

YIPPEDY DOO! WONDERFUL NEWS! :-) :-) :-)

Rejoicing with you...

Paula

6 likes
Reply
Wroxham

Super duper news Brian.

So pleased.

Sue

6 likes
Reply
Peggy4

Wow! Definitely a ‘sitting on top of the world’ day. So very pleased for you. It must be a wonderful feeling.

Peggy 😀😀.

6 likes
Reply
migirlusa

Brian you are an inspiration. You have given us all hope. Have a wonderful celebration.

8 likes
Reply
Indolent

Great news and inspiration for all of us!

5 likes
Reply
albie58

Such wonderful news!!

4 likes
Reply
ap64

You have every right to react. I hope your next adventures are nothing but fun filled. You have been very brave to give this treatment a try and a pioneer for our community. Thank you.

6 likes
Reply
Cmac70

Thats great news, very happy for you. You deserve to be giddy for more than a day.

Chris

5 likes
Reply
ahuitse

Congratulations hardly conveys it. I am truly so excited for you. Your posts and blogs give so much encouragement. Never underestimate the hope you give people. Coincidentally I believe I sat next to you in the waiting area at OSU last Dec. I was not sure it was you until they called your name. Next time I will say hello.

Ed

5 likes
Reply
Yuck

Fabulous news! Thank you so much for all you have done and continue to do for the CLL community. We are all in this together as you say, and now we all can celebrate along with you and yours. So deeply appreciative here in Massachusetts.

8 likes
Reply
fell

Phenomenal news!!! So happy for you and your family, Brian! We are all celebrating right along with you 😊

8 likes
Reply
db601

Dr B!

Fabulous news!

Doing my happy dance!!!

&@&@&@&

Thank you for all you do for our community.

*Stay strong*

-Diana

5 likes
Reply
KL2018

I hope every day you feel stronger and more joy. I am thrilled, beyond thrilled you have made it through and found life waiting. Home is going to seem much sweeter. Are they letting you get out of there anytime soon?

6 likes
Reply
bkoffman
bkoffmanCLL CURE Hero
in reply to KL2018

End of next week.

8 likes
Reply
nkferg

Awesome!

5 likes
Reply
annmcgowan

Hi Brian absolutely fantastic news, you deserve your enjoyment. Thank you for sharing Your journey. Enjoy.

Ann 👍😀

5 likes
Reply
pkpayne

I am giddy as well!!!!! I think everyone on this forum has been waiting with bated breath to hear this news! We will all be celebrating with you today! Congratulations! And thank you!

Paula

5 likes
Reply
CLLCalifornia-USA

I have been following your journey daily and am ecstatic. What courage and determination you have shown. Thanks for paving the way for the rest of us. A heartfelt thank you for daily sharing your journey so we could cheer you on. Sally

5 likes
Reply
KL2018

OK, have opened this up and reread it x3. I have been struggling a bit the last day or two and your news is just so happy! And encouraging!

4 likes
Reply
Ballyhoo77

Very good news. Wishing you the very best.

3 likes
Reply
Newdawn
NewdawnAdministrator

Oh do a little dance of joy Brian!

In fact let’s start a cyber conga and we’ll all join in to celebrate this wonderful news! 🕺💃

Newdawn

8 likes
Reply
gemit2000

grateful for the "negative" results and your positive outlook

grateful for your joy and your family's including your CLL family

grateful for all you do for the CLL community

and most of all grateful to the awesome brilliance of doctors & scientists that pioneer these awesome, brilliant new therapeutic breakthroughs.

11 likes
Reply
sandybeaches

absolutely fantastic news!! we are all celebrating with you🥂

Sandy Beaches

4 likes
Reply
Elizabetha

Wonderful news! Definitely time to celebrate🎆🎇🎉

4 likes
Reply
lilica955

Fantastic news!

4 likes
Reply
prosecco1

Fantastic news, I'm so happy for you

Elle xx

3 likes
Reply
PlanetaryKim

Such AWESOME news, Brian!!! It lifts us all up. Good for you.

kim

3 likes
Reply
DaleFL

I am so happy for you. You give us hope and inspiration. Thank you.

2 likes
Reply
bkoffman
bkoffmanCLL CURE Hero

I am overwhelmed and so appreciative of all the kind and encouraging replies. I know in my heart that this journey was made easier and my chances for this wonderful outcome was increased by all the kind notes, words of encouragement and prayers that I and my family received. I can't begin to thank you all adequately and share what being part of this community has meant to me.

17 likes
Reply
Corkyrissa
Corkyrissa
in reply to bkoffman

So happy for you and your family. I have read your blogs on this site but never knew you were a Dr.?? Congratulations !!!! Prayers go out to you and your family. Celebrate,do a jig,laugh , scream and enjoy your health. You deserve it. I have been on imbruvica for 8 months and feeling much better. Wow 69 months now I have hope that maybe I will be fortunate enough to go that long. As long as I am able to get continued funding for the meds. This is a struggle for all of us . God Bless you 😘❤️🙏🏻👏👏

1 like
Reply
Ohannie236

Wonderful news, Brian! Prayers for you going forward. Everyone rejoicing with you today!

2 likes
Reply
StasiaURos

Congratulations you did proper choice in therapy. Take it easy,do lots of rest.Thank You for share. We are all in it together as you said.SZR

3 likes
Reply
Mystic75

Congratulations! This is fabulous news and can only imagine how you and your family must feel to have the CLL burden lifted from you after shouldering it for so long. It must feel positively euphoric!

Thank you so much for sharing all of your experiences with the CLL community and their families so we can learn, be encouraged and know that we are not alone.

Personally, I think you're entitled to at least one more salmon dinner before you leave Seattle to celebrate (I know I would but then I've never been too good at sticking to a diet.)

Hope the remaining part of your recovery comes soon!

2 likes
Reply
MsLockYourPosts
MsLockYourPostsVolunteer
in reply to Mystic75

Raw vegan. I hope you found some interesting new places to eat! Still looking for your cookbook, or maybe it should be called a guide to a raw vegan life, and maybe Patty should actually be the one writing it. Still on a high after reading your latest post! Hopefully we will all have less complicated lives in 2020 (or is it 21?) and can meet up at the next Canadian conference. I was hoping that the San Diego Conference would become an ongoing event, but off years from the Canadian Conference. Maybe?

Reply
louise66

Brilliant news - well done.

Louise :)

1 like
Reply
starsafta

Mazel tov, Brian. You and Patty look great.

Welcome back to the world after your ordeal.

May you go from strength to strength.

leah

2 likes
Reply
Reinhard

Great news! Very inspiring!

Many thanks for sharing your story.

1 like
Reply
dmmck

Wow! Thanks for the fantastic news and for sharing so much with us. Wishing you nothing but the best.

1 like
Reply
C180ji

That is fantastic news, so happy for you Brian. Gives us all hope 😄.

Reply
ontheblock

Mazel tov. Now the wait to see how long it lasts

Reply
Name-1

I am very happy for you Brian!

2 likes
Reply
9876

Wonderful news , 👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻

Reply
Sepsur

Great news

Reply
BeckyLUSA

Congratulations Dr K! Since beginning my CLL journey, you have been an inspiration at every turn. Documenting your journey, through all your have experienced has to have been a struggle at times. We do appreciate it! Hopefully you will never have to deal with the CLL again on a personal basis!

Thoughts and prayers still with you.

BeckyL USA

Reply
wmay13241

F A N T A S T I S T I C ! ! ! ! My wife had aggressive follicular lymphoma and progressed rapidly after R-CHOP, BR, Ibrutinib, and Idelalisib/rituximab. She is in an NIH CAR-T clinical trial, received a CAR-T infusion on March 2, 2016. and has been in complete remission for 26 months. Life is great.

4 likes
Reply
Yorkiemama

Brian, I am ecstatic for you! You confronted the monster head-on and came out victorious on the other side. Thank you for thinking of us all throughout your journey; we have certainly been thinking of you. Sending you much love and appreciation for all you are, do, and give.

Cynthia

1 like
Reply
cricons

Yet again you are an inspiration to us all! Beaming good thoughts for a not-too-difficult recovery!

Reply
craftmom

Great news!! Mazel tov! And thank you for sharing and all you do.

Reply
SMS-not-cll

Brian, what a wonderful way to start my day here in PA, celebrating your news of successful treatment leaving you cancer free! Even with all you endured and continue to endure as side effects, you sound so positive and ready to take on the world. You are right, we are all in this together and how good it is for all of us in this community to read your success story.

Rock on, Brian!

Wishing good days and good health to all.

SMS

Reply
Ladydi49

Been following your journey and wish you all the best. Will the blood clot eventually dissipate?

Yes we are all in this together,

Best Regards,

Dianne

Reply
SBMACLL

I am absolutely thrilled for you and your family! Thank you for posting during your treatment.

Reply
thompsonellen

Great news, Brian! Thanks for sharing your journey. And I agree it's one day to push moderation aside and celebrate joyfully!

Reply
Smakwater

You are a great contributor Brian. May you be blessed with strength, joy, and consumed with peace.

Reply
DoriZett

🙏🏻🤗👍🏼❤️

Reply
Fran57

Fantastic news!

Fran 🤗

Reply
vepiskop

Congratulations my brave hero! Thank you for sharing your remarkable journey to MRD negative. Wishing you best of luck

Vasso

Reply
Sushibruno

Congratulations Dr. koffman, i hope this will be the cure for all of us one day, without all the dangerous side effects. 👍

1 like
Reply
SlowCLL

Outstanding, you deserve this. Thanks for being here and showing the way.

Owen

Reply
kathymac52

I have been following since your journey began there....when so many lose their battle, it is great to see a warrior like you victorious! Brought tears to my eyes! "We are all in this together!" Celebrate!!!!

Reply
Eric_68

Hi BK

I have followed your story and I am so happy with your results.

It is inspiring to read this.... well done mate, you inspire hope and made me feel good today.

Reply
Dpop

Happy and excited for you!

Reply
Sucee

I bet that champagne tasted good! Fabulous news, and huge congratulations.

Best wishes from New Zealand :-)

Reply
casanova

Wonderful news! Keep on smiling and never mind the pin cushion effect of those jabs, what's a bruised tummy after the journey you've been on. Thanks for all your posts.

Maureen UK

Reply
ladyprescott

Happy for you, Brian. Very good news. Stay happy, stay well. Sounds like you're on your way. Carole

Reply
vila

Wonderful news Brian! So happy for you! You deserve it!

Reply
jijic

Congratulations! That's such great news to hear.

Reply
SimplyauburnUK

From England - you are an inspiration. Well done and your medical team.

Reply
Hidden
Hidden

Time to celebrate! Hugs!

Reply
tropicsurvivor

Congratulations for the new "cancer free" life. This is all what we want in this blog.

I hope the CAR T therapy will be available very soon to all of us at an affordable price.

Reply
Ashmom

My heart explodes with happiness for you!!! I was in Seattle last week and said a quiet prayer for you. Thank you for sharing.

Ash

1 like
Reply
bkoffman
bkoffmanCLL CURE Hero
in reply to Ashmom

Thanks

Reply
Bombelflug

You are an inspiration. Awesome.

Reply

You may also like...