CLL Support Association

MRD Negative - no sweeter words!

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

Best wishes

Jack

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

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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

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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.

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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 :)

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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

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Thank you Chris

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Stellar news...Enjoy!

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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

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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!

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

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Brilliant news - well done!

Enjoy your fizz - you all deserve it.

Louise :)

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

Thanks for letting us know.

Enjoy.

Sue

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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.

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Just great news Kate. Enjoy your travels.

Sue xx

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Yeaaaaaaah!

Congratulations !

I am so pleased!

Geoff

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

Enjoy that champagne - you deserve it...

Paula

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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

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

Regards

John

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"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.

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Congratulations!! So happy to hear your good news!

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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

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Great news! Enjoy every moment ☺

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Brill news Kate!

Cheers,

keepfit123

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

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congratulations! so happy to hear your news, celebrate!

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

Cheers to you and your loved ones!

Nan

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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.

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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 :))

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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

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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.

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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

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Fantastic news, so pleased for you.

Enjoy the Champagne, cheers

Elle x🍹

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

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

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Fantastic news!

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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

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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.

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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🍾

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Glad to hear your remission is going so well.

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Not "for" but FCR cycles !

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

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Great news Kate, enjoy the champagne, Terry

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

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Great news! May your remission be a long one!

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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 )

👯👯👯🍸🍸😉.

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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!

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

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

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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.

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Count us in.

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

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Fabulous news. So pleased for you and your family.

Maureen

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

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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

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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

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Congratulations Kate!!!! Wonderful news!

fayeander

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