Help, FCR OR BR?

[flutterbye]

My oncologist has telephoned me today giving me an option of either FCR or BR. As I am 11q del I thought I had only one option! She told me that the FLAIR trial will be starting in 6-8 weeks time but as my WBC is at 387 and my Hg is 95 she would like me to start treatment now. I am 52 years old now and have been on watch and wait for 4 years and 9 months. any ideas? Thanks Jacqueline

[Cllcanada Top Poster CURE Hero]

The following clinical trial is just opened might be something to discuss with your doctor....

cancerresearchuk.org/cancer...

More Info

ukctg.nihr.ac.uk/trialdetai...

[RemingtonSteele]

I do not have any knowledge of anything other than BR which I started two weeks ago. I can say that the side effects are mild and have helped me a lot. I was not given an option however. I was simply told we are going to do this.

Did she discuss the pros and cons of each with you?

Randy

[Cammie]

I think you should ask for more info.

With 11q delation it is important you get the treatment that suits you most.

I'm no clinician so can't say which that is.

After the initial shock it's important you are given sound advice!

[MJN44]

Hi there

My husband is 47, has 17p deletion and started Ibrutinib last month. We were told this was the best treatment available if you have poor prognostic markers like 17p. It's only the second month so bit early to tell yet how it is going. He was advised not to have FCR as it the response rate apparently isn't very good for people with poor prognostic markers.

[zentangle in reply to MJN44]

Hi MJN44,

Hope everything's going well with your husband at present.Are you in UK or USA or even a different country? I'm 48, don't know my prognostic markers, but am interested to hear Ibrutinib being used as first line therapy.

[MJN44 in reply to zentangle]

Hi there

We are in Australia. We're only six weeks into treatment at the moment and apparently it's going as expected. Absolutely no side effects which is good. Happy to let you know how it goes over the next few months.

[zentangle in reply to MJN44]

That would be brilliant. All best wishes for the treatment.

Regards,

zentangle

[Nina5143 in reply to MJN44]

Hi there. My husband was diagnosed this month with 11q. He is 48 yrs old. How did your husband respond to treatment?

[nvp815]

I also have 11q deletion and am currently on watch and wait. When my CLL specialist called to tell me about the 11q deletion, he advised when I was ready for treatment FCR would be the best option for someone with this deletion. Best of luck to you. Please keep us posted on your decision and your progress.

[Nina5143 in reply to nvp815]

Hi there. How was your treatment? My husband was just diagnosed with 11q.

[MJN44 in reply to Nina5143]

Hi there

He's been on Ibrutinib for almost a year now (front line treatment, never had FCR) and has had no side effects. He is currently in remission, with all blood counts within normal ranges. However he didn't have 11q; he has 17p deletion.

He is going into hospital next week for a stem cell transplant. Doctors think it is too risky to stay on Ibrutinib due to chance of Richter's Transformation.

All the best

m

[Cllcanada Top Poster CURE Hero]

Noted CLL expert the late Dr. Terry Hamblin discussed FCR in 11q at some length... in the context of adding Rituxan to FC...

'At the same time as this paper was being presented at ASH the results of the German CLL8 trial were becoming known. This study confirms that adding R to FC moves patients with del 11q from the high risk to the standard risk group for both PFS and overall survival. With two studies telling us this I think we can believe it.,'

mutated-unmuated.blogspot.c...

[charliegirl]

I was offered the same choice a few weeks ago. I also have 11q- but am older than you at 66.

My first reaction is that leaving final choice between 2 current treatment s to the patient is difficult. I say this having also been offered either FCR or BR just a few weeks ago (also 11q- but older at 66).

I was fully informed and have kept up to date with recent research

I know that FCR has a proven track record of success in 11q- which to the best of my knowledge is not the case so far with BR. At the same time I knew that my consultant had some concerns about FCR because of the possibility of it causing long term damage to my bone marrow in view of my older age.

When I pushed him re which he would really recommend for me he insisted that it had to be my decision.

In some ways life was easier in the days of paternalistic care!

My choice - subject of a question I recently posted a week or two ago. Turned out I was eligible for Ibrutinib and that's a whole new story that I ll post here!

Good luck and hope whatever choice you make works welíl for you. May

[flutterbye in reply to charliegirl]

Thanks to everyone for their advice! After my telephone conversation with my oncologist on Friday I received an email from my CLL specialist Prof Devereux. I have always said that I do not want chemo, so much so that my prayers hopefully have been heard. He has indicated that if my oncologist agrees, I can start the iciCLLe trial. The only small draw back is that I am in Scotland and the trial is in England but hey ho that is a small price to pay. I see my oncologist tomorrow so fingers crossed. Best wishes to all.....Jacqueline

[Saratoga in reply to flutterbye]

Hello Jacqueline, I have read ll the post, and hope this finds you well. My husband has been given rituxan/ bensamustine (BR) started a month ago. 15 dys after treatment which he had no reaction at all, he developed an infection they say from low immune which put him in ICU for 8 days. He is home 2 days feels good but went through hell the past week. 5 blood transfusions, RBC 7.2 fever 102.7 low pressure and kidney issues, thankfully all good now. He has SLL not CLL with q13 the only off factor. He does have another rare autoimmune issue called Cold agglutinin disease. Good luck, cathy

[PaulaS Volunteer in reply to Saratoga]

Hi Cathy,

I was so sorry to hear what your husband went through, last week. Thank goodness he seems to be on the mend now. I do hope things go well for him in future.

Best wishes,

Paula

[PaulaS Volunteer in reply to flutterbye]

That's wonderful news, Jacqueline. I too have been told to expect either FCR or BR soon, but would love to get on the iciCLLe trial. The idea of definitely having Ibrutinib, with nothing else, with no chance of placebos, is VERY attractive. And I do live in England! Trouble is that although I keep being told I'll need treatment very soon, I'm not at the point of needing it desperately, just yet... (My ALC is 203,000, doubling every year, but I'm only slightly anaemic, other bloods OK and no big nodes). But I am SO TIRED that my lifestyle is very limited now. The thought of a non-chemo treatment that would give me more energy, is like a dream...

Anyway, I'm very glad that you've got the opportunity for it (probably), and I wish you well. Do keep us in touch, as to how you get on.

Paula (in Sheffield)

[Nina5143 in reply to charliegirl]

Did u do FCR or BR? My husband starts treatment in December...this his decision now to make and I am heavily researching. Best wishes, Nina

[flutterbye in reply to Nina5143]

Hi Nina! My heart goes out to you both! It's very difficult when treatment comes around and you don't know what to do. I got lucky I didn't do any.I'm on a clinical trial with ibrutinib and doing great! Best wishes Jacqueline

[Nina5143 in reply to flutterbye]

Thank you.

[AussieNeil Partner Administrator]

Those of us unable to access non-chemo treatment and given the option of BR or FCR will be interested in the Clinical Care Options Oncology report from ASH 2014: Fludarabine and Cyclophosphamide Plus Rituximab (FCR) as Frontline Treatment for Fit CLL Patients Shows Higher Response and Longer Survival Compared With Bendamustine Plus Rituximab (BR)

FCR treatment was associated with longer PFS and higher CR rates vs BR but was associated with a higher incidence of severe neutropenia and infections.

Source: CCO Independent Conference Coverage of the 2014 American Society of Hematology Annual Meeting"

clinicaloptions.com/Oncolog...

Neil