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

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CAR-T day 28 results

Debinoz profile image
61 Replies

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...

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Debinoz profile image
Debinoz
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61 Replies
PaulaS profile image
PaulaSVolunteer

Wonderful news! So pleased for you. :-)

Yvbb profile image
Yvbb

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

Eucalyptus22 profile image
Eucalyptus22

Wonderful news.

nanasu profile image
nanasu

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

HopeME profile image
HopeME

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 profile image
NewdawnAdministrator

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

Newdawn

DebinOzinLondon profile image
DebinOzinLondon in reply to 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

Koda1234 profile image
Koda1234

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

Jm954 profile image
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

DebinOzinLondon profile image
DebinOzinLondon in reply to Jm954

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.

Psmithuk profile image
Psmithuk

Wahey! Wonderful 😁 🎉

Peggy4 profile image
Peggy4

Just.....WOW! 🎉🎉

Peggy

GMa27 profile image
GMa27

🎉💪🎉

Horatio2 profile image
Horatio2

Awesome news!!!!

DaleFL profile image
DaleFL

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

Canuck901 profile image
Canuck901

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

wishing this was the new standard therapy for Everyone

DebinOzinLondon profile image
DebinOzinLondon in reply to Canuck901

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!

Mystic75 profile image
Mystic75

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 profile image
cllady01Former Volunteer

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

Jackpot profile image
Jackpot

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

Koda1234 profile image
Koda1234

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!

Sushibruno profile image
Sushibruno

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

Justasheet1 profile image
Justasheet1

🎉🎉🎉🎉🙏🏻🙏🏻🙏🏻

Shepherd777 profile image
Shepherd777

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!

Mldeterm profile image
Mldeterm

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

Ghounds profile image
Ghounds

Fantastic! I'm very happy for you! 😍

louise66 profile image
louise66

Hi,

Brilliant - well done.

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

Louise x

Lakeviewg profile image
Lakeviewg

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

AnneHill profile image
AnneHill

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

Please keep in touch. Anne uk

seelel profile image
seelel

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

elkk profile image
elkk

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

elkk au

Rmjersey profile image
Rmjersey

Congratulations! That’s fantastic news.

very profile image
very

Great news

ladyscream profile image
ladyscream

So happy for you

Thanks for posting.

🥳🥂🍾

wiganfan profile image
wiganfan

Great news , really pleased for you 👍

Fran57 profile image
Fran57

So much good news on here at the moment!

That’s great! Stay safe,

Fran 😉

bennevisplace profile image
bennevisplace

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

Cllsller profile image
Cllsller

So very happy for you and your family.

Eucalyptus22 profile image
Eucalyptus22

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

Gives us all hope xx

pati23 profile image
pati23

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

Smakwater profile image
Smakwater

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

JM

Psalm22-3 profile image
Psalm22-3

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

DebinOzinLondon profile image
DebinOzinLondon

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

DebinOzinLondon profile image
DebinOzinLondon

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 profile image
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

DebinOzinLondon profile image
DebinOzinLondon in reply to Newdawn

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

Panz profile image
Panz

This is super great news!

Panz 🙏💕☘️

Big_Dee profile image
Big_Dee

Hello Debinoz

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

studebaker profile image
studebaker

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

CoCoLuna11 profile image
CoCoLuna11

Awesome Deb!! Rooting for you all the way 💪

mk2045 profile image
mk2045

Awesome!

Adlucy profile image
Adlucy

Wonderful news. I am so pleased for you.

Oleboyredw-uk profile image
Oleboyredw-uk

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

bayside64 profile image
bayside64

Congrats for such great news!

Teddo profile image
Teddo

So happy for you.

bbreeland profile image
bbreeland

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

JustAGuy profile image
JustAGuy

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!

DebinOzinLondon profile image
DebinOzinLondon in reply to JustAGuy

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.

Bubnojay profile image
Bubnojay

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

DebinOzinLondon profile image
DebinOzinLondon

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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