FCR or BR proposed for second round of treatme... - CLL Support

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FCR or BR proposed for second round of treatment in London

romarin
romarin

Diagnosed end of 2013. FLAIR trail Nov 2015 – June 2016 stopped due to severe muscle pain. (See previous posts) Now need more treatment. Moved up partly because I also need a hip replacement and they can’t do it with my low immunity. So I am now being offered FCR or BR. A year or so ago I was told there were still plenty of other options. If this is all that is available OK. But I wonder what others think re NHS options at this stage? Thanks as ever. Greetings and good future wishes to all.

6 Replies
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Jm954
Jm954Administrator

Romarin, I've sent you a private 'Chat' message about this.

Jackie

A person's treatment is based on markers. FCR and BR are not offered to the same person. I had FCR...B would not be offered to me. I am 13q mutated. What are your markers? Suggest you get second opinion.

romarin
romarin
in reply to GMa27

Well that's interesting. I am 13q deletion. Is that the same as mutated...?

This is the 2nd opinion! First offered me FCR or obinutuzumab, which 2nd opinion has said I was not qualified for anyway.

Thanks

GMa27
GMa27
in reply to romarin

13 q is your chromosome deletion. Whether your mutated or unmutated is different. Check your test results. Look for those terms. BR and FCR are for different markers ....FCR or Ibrutinib can be offered. BR or Ibrutinib...but not the 2 chemos.

romarin
romarin
in reply to GMa27

Thanks for your advice. Unmutated. Drs accept I need V and maybe R.....

I will post more detail soon.

Are there any new clinical trials available to you with one of the new BTK inhibitors? You were taken off Ibrutinib due to side effects. A different one would work for you possibly without the side effects.

Jeff

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