This is my first post.I am however an avid reader and have been greatly impressed by the quality of the advice offered by contributers.I hope I will have some responses to my post.I am 79,in good shape with good prognostic indicators and no adverse symmptoms at present.After 8 years of W&W I was treated with B+R in early 2012.I had massive adverse reactions and had to terminate treatment after 2 of the planned 6 sessions.The impact of the 2 sessions was to return all my blood counts to normal range,and there they have remained for nearly 3 years.However, the trend of my numbers suggests that I may require treatment soon .What are the current options in the UK for someone in my position?


13 Replies

  • Hi Django, Thanks for posting - for the first time!! It will be very interesting to see how people answer your question. I asked a similar one a couple of weeks ago, and found people's responses EXTREMELY helpful.

    I have to say that I am NOT an expert in this, and the situation is changing all the time. I'm sure other people will give you more informed and up-to-date information than I can. However, my first reaction was to think that one of the new treatments like Ibrutinib might be good for you, though as I expect you know, it is not easily available yet in the UK, except in trials and maybe special circumstances.

    Chlorambucil is another possibility. It's been available and well-used for many years and is often the most appropriate thing for older people.

    You say you have no "adverse symptoms" at the moment, so hopefully you won't need treatment too soon.

    I think it's worth actually asking your own doctor, what treatments there are for someone like you. He/she will know your background. Hopefully they will list the options for you (like my doctor did for me).

    Wishing you all the best,


  • P.S. I realise that sometimes our doctors are not aware of all the latest options, so it's a good idea to be asking about them, on this site.

    Also, I was wondering which elements of your B+R treatment did your have the bad reactions to? Was it the Bendamustine, or the Rituximab?

  • P.S. Sorry - me again. I've just read on a link CLLCanada has jsut posted, that the following drugs are going to be re-evaluated by the NHS next month, for use in CLL

    Ofatumumab (Arzerra) – For Second and subsequent line treatment of chronic lymphocytic leukaemia

    Idelalisib (Zydelig) – For relapsed chronic lymphocytic leukaemia in combination with rituximab not eligible for cytotoxic therapies

    So, new possibilities are coming out all the time...

  • Those are going to be re-evaluated, Paula... the new ones to be added perhaps, will be

    Idelalisib – First line chronic lymphocytic leukaemia in high risk patients i.e. 17p deletion and/or a mutation of the TP53 gene

    Ibrutinib – relapsed or first line chronic lymphocytic leukaemia in 17p deletion or TP53 mutation

    But these are very narrow use...

  • Ah, sorry Chris and Django - I didn't understood all that link was saying - should have read it more carefully.. Still, it looks like some some steps are being made towards better treatments for 17p deletions and TP53 mutations.



    Thanks for the replies.Paula it was Bendamustine which proved too toxic for me.Can anyone refer me to a link which gives some info on the effectiveness of Ofatumumab?

  • There are no head to head studies, but here are a couple of papers loking at ofatumumab in previously treated...



  • Hi Django,

    Seeing as it was the Bendamustine which was too toxic for you, maybe Rituximab would still be helpful, possibly in combination with something else? I think Rituximab is sometimes given with Chlorambucil. And I believe I read that in January, NiCE may recommend Ofatumumab for use with Chlorambucil.

    It's interesting that Rituxan (Rituximab) is a chemeric human-hamster/mouse monoclonal antibody. Ofatumumab is a fully humanized monoclonal antibody... (Thanks for that info, Cllcanada). One might expect that the humanized version would be better than the hamster/mouse one, but I'm only speculating on that.

    As I said, I'm not an expert, but maybe this is giving you some ideas that you can ask your doctor about, next time.


    P.S. Chlorambucil is an "old" drug and maybe gone "out of fashion" a bit these days, but many doctors are saying it can still be very effective.

  • Chlorambucil and Bendamustine are of the same family, which also includes cyclophosphamide... they are based on nitrogen mustard gas, a chemical weapon of WWII, thankfully never used... they are classed as alkylating agents.

    Bendamustine has the added 'feature' of a purine analogue ring... similar to fludarabine... and nobody really knows how it works

    Interesting history...


  • I was interested to read about the history of Bendamustine. (Thanks for the link, Chris).

    It's also interesting to know which medicines belong to the same families. Though thinking of your situation, Django, I don't think it follows (though I may be wrong), that if someone has problems with one member of a medicine family (eg Bendamustine - based on nitrogen mustard gas), they will necessarily also have it with another (eg Chlorambucil - also based on nitrogen mustard gas). Bendamustine is also a more complicated thing with its purine analogue ring, so is probably more likely to cause problems.

    Still on the subject of "families" of medicines - the Blood journal article above seems to say that some people responded positively to Ofatumumab (a monoclonal antibody), even if they were refractory to Rituximab (another monoclonal antibody). I found this article quite heavy going, but I think that was one of the things it was saying.

    Having said all of this, you might find a way of getting Ibrutinib, like Haileybury did. It seems well worth asking about it.. Let your doctor know that you are well informed in these things - it might make a difference.


  • Welcome to the site. I would certainly ask your consultant about what trials are available in your area. And some treatments generally available only on trial, like Ibrutinib, may be offered exceptionally in some parts of the UK if FCR or other forms of chemotherapy have not worked well in the past.

  • Hello, Django. Welcome to the "club". I can't advise on treatments as everyone is different and it depends what doctor you are seen by.

    I am 75, and had adverse reactions after two courses of FCR earlier this year which was then stopped. My local haematologist consultant then agreed to refer me to a CLL specialist and after a few weeks, I had an appointment in Oxford (2 hours drive away) with the wonderfully experienced Dr Anna Schuh. I was so lucky as she agreed that I was a case for treatment with Ibrutinib which I have been on for nearly two months. It's working and it's not chemo ! I am very happy that I am on the right treatment for me now.

    My advice is that you should try to see a CLL specialist. They have more treatment options.

    All the best to you.


  • Hi Everone

    Many thanks for the kind responses to my question .The information provided was usefull

    Best Wishes


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