Just got MRD negative πŸŽ‰: Excited to say I’m MRD... - CLL Support

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Just got MRD negative πŸŽ‰

Catnap7
Catnap7
β€’77 Replies

Excited to say I’m MRD negative πŸŽ‰πŸŽ‰ πŸŽ‰ I have been in clinical trial for relapsed CLL for 14 months and am on Ibrutinib and Venetoclax. I made it through the worst mouth sores ever imaginable ....they even lowered my dosage of Ibrutinib which I thought would ruin my chances

I want to thank everyone for all your valuable information ... you helped me in so many ways and this site was like a miracle when I found it. I learned and will continue to learn right here

My trial is up in a year but I will need to stay with Ibrutinib a while longer. My best to you and God Bless you for all you go through ❣️

Catnap7

77 Replies
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Newdawn
NewdawnAdministrator

Yay! πŸ˜€

Fabulous news and desperately hoping for the same!

Newdawn

Catnap7
Catnap7
in reply to Newdawn

Thank you and YOU are almost thereπŸ‘

Teresa252
Teresa252
in reply to Newdawn

Fingers crossed for you too New Dawn🀞🀞

Congratulations πŸŽŠπŸŽˆπŸŽ‰

Catnap7
Catnap7
in reply to WinJ3

Thank you so much

πŸ™ŒπŸ™ŒπŸ™Œ

Catnap7
Catnap7
in reply to Sepsur

Thank you

Fantastic news. Congratulations.

Catnap7
Catnap7
in reply to sweatbee

Thanks so much

This is just super good news and we in this community just love good news...thank you so much for sharing and keep the good news coming!!!

Panz πŸ™πŸ’•β˜˜οΈπŸ˜

Catnap7
Catnap7
in reply to Panz

Yes. I sure hope I and V and other drug combinations will hold and work for all of us so we can wave goodbye to CLL

Sushibruno
Sushibruno
in reply to Catnap7

I echo THOSE WORDSπŸ’ƒ.

πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰

πŸ‘πŸ‘πŸ‘

Catnap7
Catnap7
in reply to Sushibruno

😊 THANKS

thanks for being a pioneer

Catnap7
Catnap7
in reply to may04cll

Well for me it certainly looked like the best option I had and I wanted to be a part of helping

others in the future so that’s really why I chose the trial.... Best to you. !!!

Wonderful!! That’s great news!πŸŽ†πŸŽ‰πŸŽ‡πŸŽŠ

Catnap7
Catnap7
in reply to Kokobean

Thank you so much It was so good to get that call

Phenomenal news!πŸŽ‰

Catnap7
Catnap7
in reply to fell

Big thanks !!!

Yay!!!! So thrilled for you!

Sandy

Catnap7
Catnap7
in reply to Sojomama13

Thank you !!!! Wishing all good for you

Sojomama13
Sojomama13
in reply to Catnap7

β€οΈπŸ™πŸ˜˜

Good news !!!

On ibrutinib for 17 months and after seeing the success of I+V in ASH19 trials , i asked my Dr if there is in mind any trial for people like me , who has been on I for a long time with good results. But she says that there are not trials for non relapsed patients ...

MsLockYourPosts
MsLockYourPostsVolunteer
in reply to antonb

There may not be trials, but your doctor may be able to add V and get financial assistance for you. Others have done that. Hopefully there is some kind of tracking of results.

she wonΒ΄t ......so i asked her directly ....she said she wonΒ΄t expose patients to extra toxicity if they are doing well. So i am just curious if there are any such trials going on...

Catnap7
Catnap7
in reply to antonb

At the time I desperately needed treatment in 2015 I was afraid to go for Ibrutinib as it was so new ...instead I did BR

So i... it was only a lucky choice that made me eligible for this trial.

I thought I read the I and V combination were being considered for first line therapy

Best to you !!!!

Just doesn't get much better than that! Hopefully researchers will be able to develop a deeper level of testing to determine whether some who test MRD negative are actually cured.. they have gone so far as to say possibly cured for some of the patients in the FCR trials who have been in remission for 10+ years.

Yes I hope they will be able to determine that also. I am just so grateful for the research and how it has helped us

Thanks Catnap7

Great news! Congratulations!!

Here's to many years of health and happiness!

Carol πŸ‡¨πŸ‡¦

Catnap7
Catnap7
in reply to DisneyMom

Thank you πŸ™

Happy MRD negativity! I hope you celebrate with a cake, family and friends!πŸŽ‚πŸŽŠπŸŽˆ

Catnap7
Catnap7
in reply to edelweiss

Thank you ! Yes we are celebrating but also toasting to the new cancer drugs that are working and keeping us going😊

πŸ˜ƒπŸ₯³πŸ₯³CONGRATULATIONS !πŸ₯³πŸ₯³πŸ˜ƒ

Catnap7
Catnap7
in reply to MystyUK

Thanks so much πŸ™

Congratulations

Catnap7
Catnap7
in reply to Yeaung

πŸ™πŸ™πŸ™

congratulation that's very good news

Catnap7
Catnap7
in reply to MAZ181188

Yes I am really happy

Thanks !!!

Thanks for sharing your story and providing some hope this morning for myself as well many others I suspect. I don’t recall too many MRD negative reports from I & V recipients in the relapse category after chemo and specifically BR chemo. Further information in the months ahead on the thought process regarding how long you stay on these drugs would be much appreciated.

Best

Mark

Catnap7
Catnap7
in reply to HopeME

For sure. I will always be reading on here every day so will let people know how it is going. Thank you

Every story I read like yours makes my future that much brighter. Best of luck to your new norm.

Catnap7
Catnap7
in reply to jerard59

thank you πŸ™ I am so happy my news is making people feel better about their future Best to you

Congrats! Great news!

I’ m so happy for you! Congratulations!! You give me hope. I have 7 months left in my I+V+O trial and doing really well with the current exception of pretty miserable mouth sores. Thanks for sharing your great news. Tom

Catnap7
Catnap7
in reply to ttomo

If you ever need any help on selecting the right mouth sore temporary remedy ... I have done everything there is to do and would be glad to share what I do

Thanks for the congrats

ttomo
ttomo
in reply to Catnap7

Thanks so much. I would love to know what you have done to manage mouth sores. Did you have them for a very long time? At this point I haven’t received any help with this from my trial team. I have tried a couple of OTC mouth washes and oil of oregano. Tom

My husband has been in the same trial since April 2019. He goes completely off in July of 2020. Dr. says that all of his blood work is in normal ranges. We are so excited for you.

Catnap7
Catnap7
in reply to Pinhead1

Thank you and I wish the BEST to your husband!!!!

Thank you for sharing your positive news. This means so much to so many of us. Brightened my name. Looking forward to seeing my Doctor and asking "Hey what about me on this combination?"

Catnap7
Catnap7
in reply to joanne17

Hopefully soon there will be this combination and other combinations

I pray for that every day. Thank you

That's great news! I hope that it continues for you for a long time...:)

Chris

Catnap7
Catnap7
in reply to noeagaman

I do to but we just don’t know yet

Thanks and best to you !!!

Congratulation ! πŸŽ‰ I am going to discuss that protocol with my doctor on 23rd.

Dana

Catnap7
Catnap7
in reply to studebaker

Thanks for the congrats

Great news!!

Catnap7
Catnap7
in reply to bayside64

Thank you πŸ™

Wonderful news!

πŸ™πŸ™πŸ™

Great news! La vita e bella (like in the film by Roberto Benigni "Life is beautiful")

Congrats!!

Hip, hip, hooray!!!!! Go celebrate!

Catnap7
Catnap7
in reply to pkpayne

Maybe one🍷 Thanks

πŸ™πŸ‘πŸ₯‚congratulations fantastic news.

Catnap7
Catnap7
in reply to Miller1960

Thanks and best to you

The Glass is Full, The hand is Raised, The Toast is Made!πŸ₯‚

Catnap7
Catnap7
in reply to Smakwater

😁 THANKS

Great news , congrats

Hallo, congratulations. well done. How did they check MRD? Bone Marrow B?

flow cytometry? thank for replying Emma

Well they did a regular BMB and that came back as NO morphological evidence of residual disease Then they further tested the bone marrow ..something about sensitivity I am not very knowledgeable like most people on here so I’m not sure what the further testing was .. Thanks for the congrats I hope the future holds

MRD neg for everybody !!!!

Fantastic news and congratulations. Great to hear such positive news and let’s hope these drugs are soon available to everyone who needs them.

Catnap7
Catnap7
in reply to Salohcin

πŸ‘πŸ‘πŸ‘

Very encouraging for all of us in this group n pray for all who are walking the same road of success one day.stay happy and blessed Amen.

Catnap7
Catnap7
in reply to Shaheenji

God Bless you !!! Thank you so much

greaT- I know the feeling I reached MRD negative after 8 months on veneteclax

That is fantastic news! I am so pleased for you !!! Definitely worthy of a celebration!!

πŸŽ‰πŸ₯³

I am so so happy for you. Enice

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