CAR-T day 28 results : Massive news for me today... - CLL Support

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CAR-T day 28 results

Debinoz
Debinoz

Massive news for me today. I have no detectable disease - just 4 weeks post CAR-T infusion - feeling incredibly thankful.

abtandme.com/2020/10/23/swo...

61 Replies
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PaulaS
PaulaSVolunteer

Wonderful news! So pleased for you. :-)

Miracle! So happy for you and your dear ones. 🤞🏻

Wonderful news.

That`s fantastic news! hope you are celebrating as best you can!

Great news! I have been checking your blog daily while holding my breath. I’m so excited you have had such a wonderful outcome. If I listen careful I can hear the noise from a boisterous party down under 😀.

Newdawn
NewdawnAdministrator

Brilliant news Deb. That treatment doesn’t mess about in sorting business! 😉

Newdawn

It really doesn’t! Still pinching myself - you can almost hear how emotionally exhausted I was in the brief good news post above! Sorry it really should have been longer but I was trying to make sure I let everyone know at all the places I frequent as quickly as possible! Still coming down to earth x

Yes!!!! So happy for you!!!

Jm954
Jm954Administrator

Spectacular results, a fateful meeting with Norm and everything to be grateful for. It doesn't get much better than this. :)

Wishing the best of everything for you

Jackie

How gorgeous was Norm?! I wish I’d had my phone on me to ask them for a photo - I shall definitely return and get one - I bet they’ll be in the potting shed on the next sunny day here in Melbourne.

Wahey! Wonderful 😁 🎉

Just.....WOW! 🎉🎉

Peggy

🎉💪🎉

Awesome news!!!!

I am so happy you for you. Thank you for sharing your experience. 👍

fantastic news! Cheers to a durable remission. And a cure!

wishing this was the new standard therapy for Everyone

I think it will be in the not too distant future - in the meantime keep an eye out for trials and be prepared to act quickly if you qualify and get the opportunity - mine all happened so fast and added to the fear going into it as it felt so rushed!

Hurray!!! I am so relieved and happy to see your post.

Thank you for sharing and for all you do. It hasn't been easy for you but you are like a pioneer for so many others, which is such a blessing.

My hope is that you can put CLL in the rearview mirror soon!

XO

D.

cllady01
cllady01Volunteer

What a blessing to wake up to today! So happy to read of your success with Car-T.

Thank you for keeping us updated. You give all of us so much hope. Be well.

Literally got the chills reading the happy ending to your long and at times challenging story. You deserve this and I am extremely relieved to hear this news as I’ve been checking the blog all week!! Cheers!

🥳🥳congrats to you Debinoz. We all hope we can one day be able to get car-T if nothing else works.

🎉🎉🎉🎉🙏🏻🙏🏻🙏🏻

So happy happy for you...think Charlie Brown's dog snoopy dancing. I have been following your posts and videos for a long time and hope though you are no longer a CLL patient you won't forget us and will keep posting seminars you attend. Especially the new things like the "green whistle" mentioned in your blog was a real up lifting thing for me.

Massive congratulations Deb! Absolutely wonderful to hear the result! Thanks for sharing here and through your blog and other outreach!

Great news for someone who has done so much work for the best treatment options to be available for all CLL patients. So happy for your much deserved awesome outcome!

Mindy

Fantastic! I'm very happy for you! 😍

Hi,

Brilliant - well done.

Thank you for your blog it has been amazing and inspirational reading it.

Louise x

That is such incredible news, so happy to hear that for you!

Thank you for keeping us posted on here and your blog. Such encouraging news too.

Mike

I would like to echo what others have said. It seems that Car T is the future.

Please keep in touch. Anne uk

Very good news..............best wishes from a fellow Britinoz.

Wonderful news! so very happy to hear this, congratulations 💞

elkk au

Congratulations! That’s fantastic news.

Great news

So happy for you

Thanks for posting.

🥳🥂🍾

Great news , really pleased for you 👍

So much good news on here at the moment!

That’s great! Stay safe,

Fran 😉

Congratulations. A great story that should give us all hope.

So very happy for you and your family.

Wonderful news. In tears ready your blog- so happy for you.

Gives us all hope xx

I am so pleased for you, amazing, wishing you the best

Euphoria!The whole community is dancing with You Today Deb!

JM

Yay! Another graduate of CLL University. Live long and prosper!

Thanks all! So amazing how many of you have taken the time to comment. I still can’t believe it - it hasn’t sunk in. To get to this level of no detectible disease for so little physical cost and in such a short amount of time seems crazy! It feels like a bit of a blur - the Lymphodepleting chemo and the 36 hours of Cytokine Release Syndrome were the only downsides but compared to everything else I’ve gone through in ten years this is by far the easiest experience I’ve had - and it might be a cure (my doctor said he really doesn’t think it will come back and I’m thinking that way but it is taking a lot to reframe that future in my mind!). Love to you all and I promise to be back here more and to support others who might choose this down the track. Much love, Deb

PS I must do something about the fact I have two profiles on here and seem to login alternately between them! Help admins are you able to merge them?

Newdawn
NewdawnAdministrator in reply to DebinOzinLondon

Sorry Debbie, Admin don’t have access to your account/s. If you go to the bottom of this page you can click on ‘Help Centre or ‘Contact us’ and it will give you the means to contact HU who will help you with this.

Regards,

Newdawn

Thanks Newdawn! It’s funny that I have these two identities - totally my fault and at least they’re similar x

This is super great news!

Panz 🙏💕☘️

Hello Debinoz

Great news for you as well as the rest of us. Medicine marches on. Blessings.

Congratulations 🥳 to the fantastic news for you and your family Deb. You well deserve it and now, you can breathe easier to look at the future to be there for your children, grandchildren and great grandchildren.

Your journey was definitely not easy, but now you arrived victorious warrior 👍🏻👍🏻👍🏻and huge celebrations are called for. Cheers to you from Canada 🍾🥂💐🎉

Dana

Awesome Deb!! Rooting for you all the way 💪

Awesome!

Wonderful news. I am so pleased for you.

Well, I decided to read the blog before commenting. That took a while. Awesome, been said before, not sure what else to add.

Hopefully, the cost will go down, risks will become mire contained and it will become mainstream. In the meantime AWESOME!

best to all, rob

Congrats for such great news!

So happy for you.

So excited and I hope it's the cure in our future❤️

Hi, I read your blog after your last post on this forum, you are very admirable for your indomitable spirit, and your generosity by sharing your experience. Congratulations on your outstanding result with CAR-T!

I have been wondering what is different about your CAR-T than earlier versions, if any? Is it different in some way even from, say Dr Coffman's?

Thanks and congratulations again!

Thanks for the kind words and yes very good question! I’m not allowed to share the details of my CAR-T publicly at the moment because of a confidentiality agreement they made me sign which is why I speak of CAR-T so generically. The fact is that it’s a new one and hasn’t got FDA approval and there are not many of us to try this “first in man” product but if you google CLL CAR-T trials Australia there is only one and it’s very similar to one on the market already (you’ll see the drug company when you find the trial) but they’ve done something really smart with this CAR-T which is what appealed to me so much and it does definitely reduce the risk of CRS (a little bit of CRS is good but I had grade 1.5 and I wouldn’t want to know what more is like!). It is a different generation to Dr Koffman’s CAR-T But the principles are the same. I promise I’ll share more and add the name into the blog as soon as I’m allowed.

Have a ball up there on cloud nine Deb. no one deserves success more. Now just stay safe from the virus, hopefully you live outside Melbourne or at least the suburbs. My friend lives in the higher tier district.

Bubnojay

Thanks Bubnojay - yes my kids just went back to school after 25 weeks of home learning! I live in the southern bayside suburbs of Melbourne so we’re not too high risk here but when it was bad a few months ago it was everywhere! I hope your friend is ok and that you’re able to stay safe through the UK’s winter x

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