5 weeks into Flair Trial

[annsathome]

My husband who has SLL and had been on W & W for just a year, started the Flair Trial at the end of Oct. He was lucky (we hope, after it was called "a wonder drug "by his consultant) and got the Ibrutinib + Rituximab arm. All started well but after 4 days of Ibrutinib and the first Rituximab he contracted pneumonia and spent 9 days in hospital and had to stop the Ibrutinib. He received fantastic treatment there, and now, 3 weeks later is back on the trial and feeling really well, had his 2nd Rituximab this week and so far has not had any side effects except for the occasional dry mouth. ( good excuse for a beer!! ) We walk every day and he is planning to get back on the golf course next week.

His Neutrophil count went down to 0.3 whilst in hospital so is now injecting himself with Granocyte 34 which has brought it up to 4.1. His consultant wants him to continue this over the Christmas period.

Of course we do still worry about infections with him having a lower immune system but try not too get too paranoid about it. Also difficult with young grandchildren with their runny noses this time of year!!!

We would be very interested to hear experiences from anyone else who is also on the Fair Trial.

[PaulaS Volunteer]

Hi Annsathome,

Welcome to the site.

Thank you for sharing your husband's story. I was sorry to hear about his bout of pneumonia though - after just 4 days of treatment. Did the doctors think this was due to the medications, or do they reckon it was brewing already? You say his Neutrophil count went down to 0.3 whilst in hospital, but do you know what it was before he started treatment?

Anyway, the main thing is that he feels so much better now, and his neutrophils have gone up to a healthy number. Great relief. You say he's been able to have his second Rituximab infusion and was OK. Is he back on the Ibrutinib as well?

The FLAIR trial has been mentioned to me as a possibility in the near future, so I've very interested to hear how people are getting on. I think there may be a few others here who are on that trial, so hopefully they will get in touch. I know that ErnieUK is about to start it.

I hope your hubby does get back to the golf course next week, and that you both enjoy Christmas with your family. (Just gotta get the right balance between hugging grandkids and staying away from runny noses).

Wishing you all the best,

Paula

[annsathome in reply to PaulaS]

Hi Paula,

Thanks for your reply. Yes, he is back on his Ibrutinib, it was stopped in the hospital as it was not compatible with the type of antibiotic he was taking. His Neutrophil count had been slowly going down and prior to treatment was 0.7. now 4.1 Total white cell count........ prior, 3.3 now 8.5. Platelets.....prior 66 now 97

Hope all goes well with you and the right decision is made with your treatment. Steve's Consultant was very informative and was very much in favour of the FLAIR trial.

Take Care,

Ann

[PaulaS Volunteer in reply to annsathome]

Thanks for explaining that, Ann. I'm glad to hear things are going better for your husband now. I hope he can keep away from all the bugs going round these days. Sometimes we do need to be a bit paranoid about protecting ourselves...

I'm still mulling over my options for treatment. My consultant is also keen on the FLAIR trial (in spite of some "aging" in my kidneys"). But I've been given a bit more time to think about it. And the FLAIR trial is possibly going to be in Sheffield soon, which will suit me even better than Leeds..

You take care too,

Best wishes,

Paula

[shazie]

Hi Ann,

Would you please let us know how often your husband receives Rituximab? Is it every week for one month which is one cycle or every 28 days? I am very curious to find out because I think different countries offer different trials for IR. Thank you and best of luck to your husband.

[annsathome in reply to shazie]

Hi Shazie,

He has his Rituximab every 28 days, 6 in all, and 3 Ibrutinib tablets daily for up to 7 years.

The Flair trial is organised by the University of Leeds and is a study is comparing the use of Rituximab in combination with either Fludarabine and

Cyclophosphamide (FCR) or Ibrutinib (IR) in patients with previously untreated CLL or SLL. It is a random 50/50 selection with a total of 754 participants.

Hope this is of interest to you.

Take care,

Ann

[shazie]

Thank you for your reply. Here in US at Stanford University, in one of their clinical trials for IR, they offer the same regimen. Have you ever asked them why Rituxan is given every 28 days?

Shazie