Some good news and hope

[Irishcll]

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/

[PaulaS Volunteer]

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 in reply to PaulaS]

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

[PaulaS Volunteer in reply to Irishcll]

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 in reply to PaulaS]

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 Volunteer in reply to Irishcll]

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 Administrator]

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 in reply to Jm954]

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]

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 in reply to billypeats]

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]

Great news!

Stay safe,

Fran 😉

[pkguk2 Partner CLL Support Association]

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

Brian

[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]

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

[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 in reply to pati23]

Thank you Pat

[Smakwater]

Failte Irishcll,

Slainte Mhath!

JM

[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]

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]

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

[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 Partner Administrator in reply to Fionamhenry]

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 in reply to Fionamhenry]

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]

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 in reply to Imbub]

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]

Congratulations!!

[Hidden]

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