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.
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.
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.
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 😱
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.
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.
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.
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Good news. 
Good news
Good news at long last
