Some good news and hope : A very special day... - CLL Support

CLL Support

23,324 members40,028 posts

Some good news and hope

Irishcll profile image
26 Replies

A very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9 years ago age 39. We are in Ireland.

After 3 very sick years we were fortunate that she was able to access a clinical trial in the UK and in 2014 started a drug Ibrutinib which targets the cancer. Her bone marrow went from 96% cancer and today the cancer is at 0.01%.

Its not cured yet but we have great hope that the next treatments may be curative.

The challenge is always access here in Ireland and we all need to pressure our decision makers expecially during COVID as cancer is not gone away.

clli.ie/janrynne/

Written by
Irishcll profile image
Irishcll
To view profiles and participate in discussions please or .
Read more about...
26 Replies
PaulaS profile image
PaulaSVolunteer

Good to hear from you and see your smiling faces again.

Thank you for being such wonderful advocates for CLL folk in Ireland. Wishing you all the best for the future,

Paula

Irishcll profile image
Irishcll in reply toPaulaS

Thank you Paula. I hope you and family are well during these worrying times?

PaulaS profile image
PaulaSVolunteer in reply toIrishcll

We are well, thanks. Last weekend we got back from a two week holiday in Scotland, renting a self-catering cottage that had been empty for a while. Had a great time with our Glasgow family (in open air parks) and met our new granddaughter for the first time. Also enjoyed walks up hills and by lochs. It was a wonderful break... good weather too.

Now we're back in Sheffield to find Covid rates rising rapidly in our area (as well as in Glasgow). So glad we got away while we could. :-)

Irishcll profile image
Irishcll in reply toPaulaS

The holiday sounds lovely Paula and great you met your granddaughter. Its very difficult.

We went to Edinburgh last year for a CLL conference. Beautiful city.

COVID getting very serious in Ireland also.

Keep safe

Michael

PaulaS profile image
PaulaSVolunteer in reply toIrishcll

Nice to know you've been to Edinburgh, Michael. As you say, it's a beautiful city.

Sorry to hear of Covid getting worse in Ireland.

You and Jan stay safe too,

Paula (and Peter)

Jm954 profile image
Jm954Administrator

Michael, It was a privilege to meet you both last year in Edinburgh.

You've turned a personally devastating story into a huge positive for the people of Ireland with your tireless advocacy and hard work.

I'm so glad to hear Jan is going strong after 6 years of Ibrutinib, long may it last :)

Very best wishes to you both

Jackie

Irishcll profile image
Irishcll in reply toJm954

Hi Jackie

Thanks for the lovely message and it was great to meet you also in Edinburgh.

We can learn so much from you guys.

Who would have thought a pandemic was on the horizon

I hope you are keeping well and we get to meet at a future conference.

Regards

Michael

billypeats profile image
billypeats

Well lads your both looking very good congratulations and have a look ( im sure your already an expert )on car-t cell technology

best regards

Billy Peat

Irishcll profile image
Irishcll in reply tobillypeats

Hi Billy

We miss not having our face to face conference

Yes CAR T is looking positive

I hope you are keeping well during these strange times?

Regards

Michael

Fran57 profile image
Fran57

Great news!

Stay safe,

Fran 😉

pkguk2 profile image
pkguk2PartnerCLL Support Association

Really good news, Michael! Keep up the good work in Ireland and keep safe both.

Brian

Cllsller profile image
Cllsller

So glad for you both! I am on second round of Ibrutinib myself. AND yes it works for me, too.

Best of luck to you . Ireland is my favorite country; I’ve been trying to go back since last spring. I will return as soon as the travel restrictions are lifted.

Dorothy McCarthy-Star

thompsonellen profile image
thompsonellen

Thanks for the positive post! I'm in the exact same position with ibrutinib, and just a handful of years older.

pati23 profile image
pati23

Wishing you the best, having read your story, and with children to cope with, I think you are amazing and give hope to all of us.

Pat

Irishcll profile image
Irishcll in reply topati23

Thank you Pat

Smakwater profile image
Smakwater

Failte Irishcll,

Slainte Mhath!

JM

Corkyrissa profile image
Corkyrissa

I’m so happy to hear of this wonderful news. I take imbruvica and it has been working for me. God Bless you and your family. Be safe ❤️🙏🏻

GalwayGirl123 profile image
GalwayGirl123

Brilliant news. Thank you both for all the hard work you put in for those of us with CLL in Ireland. Stay safe and hopefully we can meet again soon.💕

Geom2000 profile image
Geom2000

Excellent news!!!!! Wish you the best 😊

Fionamhenry profile image
Fionamhenry

Hi, I was diagnosed 3 years ago and was on watch & wait. Today I was told it's time for treatment (I'm still in shock). I have been offered the Flair trial or FCR , I'm so confused and frightened. I have 2 weeks to decide and am weighing up all the positives & negatives. I am in northern Ireland. Any advice would be helpful 😱

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toFionamhenry

FCR is the comparison arm on the FLAIR trial, so you still have a chance of receiving FCR on that trial. You could have a ~55% chance of effectively a cure on FCR after just 6 months of treatment if you are mutated IGHV, because we've learned that if you can make it to 7 years without a remission, your remission lasts indefinitely. If you are unmutated, you are likely to have a shorter remission before needing your next treatment. The challenge is that IGHV testing is not done prior to assigning you to a FLAIR trial arm.

If you have your Flow Cytometry test results at hand (the test used to confirm your CLL diagnosis), you can check your CD38 status and possibly your ZAP-70 status. Being CD38 negative correlates to around a 60% likelihood of being IGHV mutated, a bit more if you are also ZAP-70 negative. About 50% of us are IGHV mutated, but if you were diagnosed just 3 years ago and had no indication that you had CLL before then, you are more likely to be IGHV unmutated. The other FLAIR treatment arms are non-chemo and we don't yet know if being IGHV mutated provides a long term advantage, but they do avoid the potential risk of future secondary blood cancers (around 10%) and probably a slightly better immune system post treatment. The downside is that with the Ibrutinib arms, there's a similar risk of high blood pressure or atrial fibrillation.

Neil

Irishcll profile image
Irishcll in reply toFionamhenry

Very good advice from AussieNeil.

We were in the same situation Fiona in 2014 and Jan picked the Ibrutinib trial to avoid chemo.

The fact you are in Northern Ireland you may be able to get Ibrutinib as a first line treatment. I think it was approved when COVID hit in the UK but it may not extend to northern Ireland.

Somebody here may be able to confirm this.

It's important to know the type of CLL you have to make a decision.

Wishing you the best of luck

Michael

Imbub profile image
Imbub

The ibrutinib drug has been a life saver for me...i whine about some of the side effects...but I’m happy to still be here to complain....btw have had 3 fabulous month long trips to Ireland and loved every moment I was there...keep well.

Irishcll profile image
Irishcll in reply toImbub

Thanks Imbub

Glad to hear the treatment is going well and hopefully when COVID is behind us there will be more trips to Ireland

Regards

Michael

country76 profile image
country76

Congratulations!!

Hi that is very good & hopeful news. Thanks for post

Not what you're looking for?

You may also like...

Offering hope

Today is my dad's birthday, and I am just thinking of him wanting to offer hope to those on here....
beanlake14 profile image

Bloodwise news

Blood cancer drugs kept on the Cancer Drugs Fund We're delighted to announce that NHS England have...

More Good News and Hope

During the first year after diagnosis (Christmas 2012) I had big problems with AIHA that the CLL...
Quarry profile image

Isn't it time for some Good NEWS??

My husband started Ibrutinib in April after his BR chemo failed. He is 11q deleted. We were just at...
kathymac52 profile image

Good News

I had my monthly appointment with my haematologist this week and received the good news that I am...
jaypax profile image

Moderation team

See all
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator
AussieNeil profile image
AussieNeilAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.