MRD Negative - no sweeter words!: There are... - CLL Support

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MRD Negative - no sweeter words!

KateEvaLen profile image
56 Replies

There are harder things that waiting for biopsy results, hoping that you have managed to achieve remission after chemotherapy. Even if, as with our cancer, it is a fact that remission will end sooner rather than later, and the monster will return, it was tough today waiting and hoping. To all my HealthUnlocked friends who have supported me through the last difficult months, thank you. My bloods may still be on the floor and could take another 6 or 7 months to recover, but I have at long last something big to celebrate and want to share my great news! I'm in remission. MRD Negativity. No traceable disease present. Champagne is in the fridge and I will celebrate tonight with my husband and daughter. A battle won. The war continues.

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KateEvaLen profile image
KateEvaLen
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56 Replies
jackhammer profile image
jackhammer

Excellent and brilliant news for you Kate!!.. Now is the time to sit back and enjoy the show!!.

Best wishes

Jack

olyocl profile image
olyocl

Great news, enjoy your celebration. Hope you have a long remission

Newdawn profile image
NewdawnAdministrator

This is sweet music to my ears Kate and I can only imagine the sense of relief you and you're family must be feeling.

We all know we are on an ever moving loop with this condition Kate but some manage to jump off for a very long time and some manage to never get back onto it. May you be one of the latter!

I raise my cuppa to you! (But don't leave our ranks, we need the brave survivors too! :-)

Newdawn x

KateEvaLen profile image
KateEvaLen in reply to Newdawn

Thanks New Dawn. You have always managed to keep me going through the rough times! I really didn't know how I'd feel today, as we CLLRs all know that it doesn't go away - especially when you are unmutated. But I feel like celebrating! I didn't expect to hear those words and, for however long or short the remission is, I'm going to enjoy it. I'm hoping my bloods recover quickly and I can do a little travelling in 2016.

jazzy-annie profile image
jazzy-annie in reply to KateEvaLen

KateEvaLen, just wondering how you found out that you were unmutated? I know that I am 13q, but when I asked my consultant what my mutation status was, he said that they didnt do that test here in the Rep. Ireland! Did you have to go to the UK or Northern Ireland to find out? Unfortunately for us, our daughter, Sarah, who is 12, and starting secondary school shortly, was diagnosed with type one diabetes two weeks ago, so, I am hoping that our next bit of news, whatever that might be, is positive! All in the up and down stream of life I guess! Anne :)

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to jazzy-annie

Hi Anne

If you have had a flow cytometry, which you should have the CD38 on it will be an indicator for IGHV mutations status... with a ~ 70% accuracy.

Above 30% you are likely unmutated, below likely mutated, mutated is better.

ZAP70 can also be used, but it is prone to errors in lab handling etc. The tipping point for it is 20%

Clinically these are used as guides, the only true test is a direct IGHV mutation, but it is expensive, requires special training and you are unlikely to get it done outside of a clinical trial or CLL research hospital...

~chris

jazzy-annie profile image
jazzy-annie in reply to Cllcanada

Thank you Chris

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Stellar news...Enjoy!

Peggy4 profile image
Peggy4

Oh wow! You must be jumping for joy (ok maybe not strong enough yet but a little twirl at least?) Can't express how very thrilled I am for you. Thanks for the update, positive news is always most welcome.

Peggy

Lyra profile image
Lyra

Wonderful news. I'm so glad to hear it. I know that treatment was extremely hard on you so here is your reward ☺. Enjoy that champagne and making your travel plans!

9876 profile image
9876

Such good news , enjoy the champagne, you deserve it after the last six months 🍸🍸🍾🍾

louise66 profile image
louise66

Brilliant news - well done!

Enjoy your fizz - you all deserve it.

Louise :)

wroxham-gb profile image
wroxham-gb

Excellent news for you and us all. A real spirit lifter.

Thanks for letting us know.

Enjoy.

Sue

KateEvaLen profile image
KateEvaLen in reply to wroxham-gb

As an unmutated CLLr, I know that I will inevitably relapse, but hopefully remission will last awhile! Good for all to know MRD negativity can be achieved, even if bloods crash! Price worth paying.

wroxham-gb profile image
wroxham-gb in reply to KateEvaLen

Just great news Kate. Enjoy your travels.

Sue xx

Cammie profile image
Cammie

Yeaaaaaaah!

Congratulations !

I am so pleased!

Geoff

PaulaS profile image
PaulaSVolunteer

Delighted to hear your news, Kate. It's put a big smile on my face... :-) :-)

Enjoy that champagne - you deserve it...

Paula

Foggymind profile image
Foggymind

Congratulations Kate, and may your remission be a long one. It’s great to hear good news on this forum, many thanks for sharing. You and your family enjoy that champagne.

Take care

Kevin – Essex, UK

saintjohn profile image
saintjohn

Great news Kate long may your remission last,good luck to you xx

Regards

John

cllady01 profile image
cllady01Former Volunteer

"May the road rise up to meet you. May the wind be always at your back. May the sun shine warm upon your face" as you travel far and wide.

skykomish profile image
skykomish

Congratulations!! So happy to hear your good news!

London_Girl profile image
London_Girl

Thats fantastic news Kate! Always good to hear some positive news !

Just remember we aren't too far away from a cure so enjoy life and dont give CLL another thought! ..your work is done!

Maria xxx

familyman profile image
familyman

Great news! Enjoy every moment ☺

keepfit123 profile image
keepfit123

Brill news Kate!

Cheers,

keepfit123

june65 profile image
june65

That's great news, hope the celebrations are underway. X

jules_c profile image
jules_c

congratulations! so happy to hear your news, celebrate!

nvp815 profile image
nvp815

As my kids would say, that is "awesome" news!!! I am beyond thrilled for you.

Cheers to you and your loved ones!

Nan

KateEvaLen profile image
KateEvaLen

To everyone who took the time to send me congrats and good wishes - thank you! I'm woozy from champagne (and my capacity to drink, never good, is now terrible) but so happy. Mostly, I am happy that I can now focus exclusively on getting our CLL Ireland Group up and running with a great team. So, any Irish Health Unlocked users out there, please do get in touch. We plan to be up and running very soon. The research phase is well underway and we are planning our first ever national CLL meeting here in Dublin. Thanks to the wonderful work done by others, i am happy to support! Watch this space.

jazzy-annie profile image
jazzy-annie in reply to KateEvaLen

Am so happy for you. I remember your past posts and that you had a really difficult time and am just so glad now that you are clear if it. Onwards and upwards ... Your Dublin friend ... Anne :))

Donegal profile image
Donegal in reply to KateEvaLen

Delighted for you Kate. Hope you get your strength back soon and have a long remission. Roll on the travels!!! Count me in for the support group.

Deenie

KateEvaLen profile image
KateEvaLen in reply to Donegal

That's great - cannot wait to meet up properly and get the ball rolling here for CLL. I'll be in touch as soon as date is finalised for our first meeting. Hope you are doing well.

sam-sam profile image
sam-sam in reply to KateEvaLen

Hi, Kate,

I thought all work on an Irish group had stopped..evaporated. This is good news! Like Deenie from Donegal, I would like to be "counted in",even 'though I am hardly an official CLL-er, living on the magical 5% line, on W&W.

Betty

prosecco1 profile image
prosecco1

Fantastic news, so pleased for you.

Enjoy the Champagne, cheers

Elle x🍹

ballyhoo profile image
ballyhoo

Wishing you many years of remission or even better maybe cured. Enjoy Life , Best Wishes.

MsDJ profile image
MsDJ

Wow that is the best news ever, so happy for you, so encouraging to here, enjoy and celebrate!!!

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Fantastic news!

Bubnojay profile image
Bubnojay

Morning Kate, hope there is no hangover.

Just had to join everyone in saying how brilliant to achieve MRD negativity, so very pleased for you.

Live long and prosper 🖖 As Spock would say, and good luck with setting things up to help other Cllers in the green Isle. Wales is looking pretty green too with all the rain.

Bubnjay1

KateEvaLen profile image
KateEvaLen in reply to Bubnojay

First hangover in about nine months! But its not too bad. Having said that I don't think I'll be drinking again for a long time. Two glasses of champagne is all that it took. I'm a poor drinker. But....I enjoyed it so much last night it was probably worth it!!

Not a great summer here either but what can you do? I plan on making the most of it now in any case.

seoul profile image
seoul

kateEva, that's a very good feeling I as well experienced after my for cycles. However, after treatment, nearly all B cells are destroyed and therefore the blood at least is clean of CLL cells. It needs to be proofed again, after one year or so, when B cells are back in place. Mine was then 0,1% CLL cells, after 18 months 0,3 and after 24 months 0,1 again. That satisfied me. As "unmutated" we need little luck as well to stay in remission for long. All the best to you. Champagne is the right answer to the good result🍾

KateEvaLen profile image
KateEvaLen in reply to seoul

Glad to hear your remission is going so well.

seoul profile image
seoul

Not "for" but FCR cycles !

mocat profile image
mocat

Brilliant, this is fantastic news for you, but gives hope to so many others. Long may it last.

terryI_uk profile image
terryI_uk

Great news Kate, enjoy the champagne, Terry

Tanta44 profile image
Tanta44

Congratulations! Welcome to the club we all want to be in. Long may it last.

KellyM profile image
KellyM

Great news! May your remission be a long one!

PE1234 profile image
PE1234

Don't think my first message of congrats went through so I am posting again Kate .

Well done and I hope it's a really long remission .Champagne is the right celebration to enjoy .

Enjoy every day Kate .( not too much bubbly though as you want to remember all the good times you will be having from now on in )

👯👯👯🍸🍸😉.

Rpshe1 profile image
Rpshe1

Congratulations! I too achieved MRD negative with my results last month. It was my hope all along but knew many don't. 🍸🎉 to us! A long deep durable remission!

KateEvaLen profile image
KateEvaLen in reply to Rpshe1

Congratulations! It is so wonderful and - as you say - so unexpected!

sandybeaches profile image
sandybeaches

Terrific news!! So glad for you and your family.

Groetjes profile image
Groetjes

Excellent news. We wish you and your family many healthy happy days ahead.

We believe focusing on each moment in front of you (one day at a time) has helped us to stay positive.

The Irish Cll group sounds like a super idea. We hope more Irish people show their interest too.

United we stand.

Groetjes profile image
Groetjes

Count us in.

We hope others will support your call to action to establish a group in Ireland.

casanova profile image
casanova

Fabulous news. So pleased for you and your family.

Maureen

Calopteryx profile image
Calopteryx

Fabulous news! I'm so pleased for you. May your remission be a long one.

pumpkin48 profile image
pumpkin48

I think of you so often and you have been in my prayers Kate,could not be happier to hear your good news!!Hoping for a long remission and many good days ahead,Pumpkin

sam-sam profile image
sam-sam

hi, Kate,

Great news, I am really pleased for you, it's been a long, hard time. I hope you'll get those bloods "off the floor" before long and will be able to have a good holiday.

Keep strong and optimistic.

Betty

fayeander profile image
fayeander

Congratulations Kate!!!! Wonderful news!

fayeander

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