Anyone had FCR as second line treatment?

[Mick491]

Hi all has any one had FCR for second line treatment if so how were your results.

I'm going back on treatment after 22nd May and discussing what's best.

[Bubnojay]

Hi Mick

Nice to see you back posting, but sorry it has become necessary. Can’t help with your query but sure answers will arrive in no time at all.

Wishing you all the best,

Bubnjay1

[Mick491 in reply to Bubnojay]

Hi

Thanks

Will update on here as things progress. Waiting for genetic tests to come back then the decision on which way forward.

Mick

[Jm954 Administrator]

As it's been 7 years since your FCR then you have a chance at a good second remission but it will almost certainly be shorter than the first.

You said before that your quality of life was poor and, apart from your disability, I'm wondering if you feel that was due to the FCR. If it was then it would be worth asking if Ibrutinib would be an option. NICE recommended it for 2nd line treatment but I understand that there has been a shift in prescribing it to only those people who relapsed from FCR within a couple of years.

Please ask for your FISH testing to be done before starting any treatment as that could inform your treatment options.

Good luck

[Mick491 in reply to Jm954]

Thanks Jm954

In the quick chat with my consultant he said second line FCR averaged 18 months but due to the success of the first line treatment he wouldn't be opposed to it. However 1 in 20 can't have FCR a second time hence waiting for the genetic test results. I am prepared to discus other treatments but he's ruled one out as it's usually given to over 65s. I'm 59.

My poor quality of life is not just the CLL which does complicate things. Therefore I am both looking forward and dredding the decision on 22nd May.

Thanks for your post. Much appreciated.

[pkguk2 Partner CLL Support Association in reply to Mick491]

Hi Mick491

Health problems other than CLL can be a reason for a consultant to be able to advise Ibrutinib treatment, if they consider that further doses of FCR could adversely affect existing comorbidities, or quality of life. Certainly worth discussing and, as jm954 has said, ask for a FISH test before deciding.

Good luck on 22 May.

[Mick491 in reply to pkguk2]

Thanks

FISH test has been done. I may be wrong but I am sure it was Ibrutinib that he was talking when he said I didn't qualify because of age. But I will certainly chat about it. Many thanks.

[Jm954 Administrator in reply to Mick491]

There are no age restrictions for Ibrutinib that I am aware of.

You're only 59 years old and 18 months is no good to you. I would suggest that Ibrutinib or a clinical trial with a novel treatment/combination would be your best bet for a longer remission.

If you're uncomfortable with the decision that's made after 22/5 then please ask for a second opinion. It's important - it's your life.

Please let us know, all the best.

[AdrianUK in reply to Jm954]

Sounds like you might need a second opinion. Whereabouts in the country do you live? Can you get to see one of the real experts?

[Mick491 in reply to AdrianUK]

Thanks for the advice. I will certainly talk to my consultant he's a good man and listens. What I didn't mention was he would discus my case prior to 22/5 and have an overall conclusion.

[Jm954 Administrator in reply to Mick491]

Mick, It appears that NHS England have quietly moved the goal posts for Ibrutinib since the NICE approval. I'll have more to say at the weekend (look out for my post) but please let me know what treatment your Dr advises and why.

with best wishes

[Mick491 in reply to Jm954]

Thanks will do. I will look out for your post too.

[TheFrog]

My second line treatment was FC (R wasn't available on the NHS at the time) and I'm still in remission nearly 11 years later. I was 52 at the time so younger than you are today. I seems to be one of the lucky ones so you may want to ignore my result.

Jacques

[jijic in reply to TheFrog]

May I ask what your first line treatment was and how long it lasted?

[Mick491 in reply to jijic]

FCR and I managed 5 courses. Too I'll for the last one. But it put me in remission from 2010/11 until now.

[jijic in reply to Mick491]

Ah thanks, I'm glad to hear that! I was wondering about TheFrog as well.

[Mick491]

Not at all. Thanks for the reply. I had good results first time round so here's hoping.

[GMa27]

I start FCR next month. First time for treatment. 12 years on W&W. Encouraging to hear you had such good/ long remission after your treatment. Never heard of age restriction for Ibrutinib. I have heard FCR isn't recommended after 65. I am 63. I got second opinion and both agree FCR. Gazvya is recommended for relaspses. Is your doc recommending BMB before deciding treatment?

[Mick491]

Had BMB before and after treatment for FCR. A few decisions to be made on 22nd. Had 12 different blood test and 2 blood cultures plus x-ray and CT this time. Waiting for genetic test results now.