Dr. Furman on the Diminishing Role of FCR

Hi,

As we're getting ready to head to ASH this week, we wanted to post in response to a query that was posted originally on the CLLSLL io group forum. Dr. Richard Furman is their medical advisor and his response really puts the comparison of a therapy that has existed for decades with a therapy that is less than a decade old. You can read my commentary and the text from Dr. Furman's post cllsociety.org/2017/12/one-...

We'll be going night and day at ASH and plan to post while we are there. Stay tuned.

And stay strong,

Brian

CLLSociety.org

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Thanks Brian! I look forward to your postings from ASH.

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Thanks so much for this. I am wondering about one observation, "Combinations of adding ibrutinib and chemo have shown positive results and might offer the promise of being able to stop treatment and coast a long time with no treatment." Given the earlier observations about 17p and DNA damage under chemo, would the combination be an appropriate choice for those have a 17p deletion, or would the negative consequences suggest it is not?

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please tweet live from #ASH17

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Hello

This is my first post. This is quite sad reading if you like in the U.K. My husband is unmutated, but because he is not 17 p deleted his only option is FCR . He is on the Flair trial , but drew the FCR arm . Our consultant's response was to tell us to stop reading the internet. We are stuck . My husband is being amazing/ I am a mess .

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Hi Gailandbert. Sorry to hear that you feel you are 'a mess', but many people on this site will sympathise. I certainly can as a long time carer. It is very hard sometimes, but if I can offer some encouragement, it is at least good that your husband is not 17p deleted and it is likely, therefore, that he will get a good remission from FCR, hopefully several years. If he does at some time in the future need further treatment, he may well qualify for one of the newer drugs.

The internet is full of wrong and misleading information and that is probably why your consultant advised against using it. However, you will find lots of useful and validated information here and on the CLLSA website on which you can rely.

So please don't lose hope, try to live as normal a life as possible, and stay strong. Keep in touch and let us know how you are both doing.

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Thanks for your support. I have to try and control my imagination/ I am now worried that the FCR will alter his DNA and make him 17 p deleted! As you know in the U.K. FCR is still the first line treatment - that is why it is difficult to read posts that say don't touch it . We have no choice.

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Hi Gailandbert,

I am in a similar situation to your husband on the FCR branch of the FLAIR trial. I don't know if I'm mutated or not as my consultant didn't know! There are many obstacles in our way, but I try to live for the present and hope for the best. You will find that you are certainly not alone here, and will find the right questions to ask.

Best wishes,

John

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Thanks. At times I wish we didn't know his mutation state - we were happier with the FCR before we found out ( after his treatment had started ).

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I'm also facing the UK choice: FCR or FLAIR trial. Don't yet know my genetic situation, and with me it is SLL side of CLL - consultant is quite breezy on my getting treatment whilst my haemaglobin levels are still good, balancing quality of life in my decision; swollen lymph nodes and spleen do impinge on quality of life.. But I've little clue of the 4 treatments assigned at random within FLAIR trial. For now I'm busy and reassured by a good consult - my anxieties have greatly eased -- it's all too easy to spiral down with doubts about odd sensations, difficulty sleeping, or general new aches.

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It has been shown and discussed in this forum this week already.

Undortunately, it pleaded against FCR and highlighted Inrutinib, omitting all ither potential new drugs like venetoclax or acalabrutinib ( which will by far outnumber ibrutinib) and others.

All abstracts of ASH 207 are already available, therefore I am surprised, why news about trails and new treatments have not been released.

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