Key questions to ask your consultant

Hi everyone, sorry if you thought from the title of this message that I am providing the answers - instead, I would like your views. If you want the main point of this post skip to end, but it might help give better answers if you read through]

[aside: For anyone with the stamina, here is my background, briefly, I was Dx'd January 1997 - seems like an eternity ago. After 5 years treated with Fludarabine (did not work, CLL was becoming aggressive), then was lucky that combination of Fludarabine and Cyclophosmadide (spelling?) , initially as preparation for a Bone marrow transplant (not possible due to not being able harvest the cells) gave me a full remission for around 11 years. (How lucky was that!)Basically, I came close to the grim reaper in 2003 when I was hospitalised with a serious infection as a result of the treatment, and I told myself if I survived I would raise money for leukaemia research charity (now Bloodwise). It is what I am most proud of, since every year since 2003 I have run the Newcastle Great North Run Half Marathon and must have raised a lot over these past almost 15 years. I am even considering doing a marathon now if I think I can get extra funds for the charity. Now real serious symtoms, aside from enlarged spleen and this last year I could not shake off a cough - whoopee, finally I think this is better So fortunately no treatment has been needed or recommended since then. In 2014 my wbc started to progress again but have now stabilised at high level (I think around 120). Thanks if you are still reading! ]

But back to the point of my message, when I was Dx'd I tried to get to know everything about CLL - should have been easy as I was interested in science, but Biology was not an area I studied.

But when I got well again (so lucky have I been!) decided just to ignore it - I used to post to the US equivalent of this list - e.g. Grannybarb one of its founders, sadly no longer with us.

But because I ignored it for a while, I put a lot of information about CLL out my brain. It means I have a little knowledge here and there, but not the in depth knowledge that some people on this list have. e.g. I know that deleted genes can have implications for prognosis, but cannot remember which ones and I am a bit lazy at finding out due to the preference just to forget about it! (I know there is a lot brilliant information, but I am so busy getting on with my life most of the time and indeed this post took up a bit more time than I thought)

So when I come to my consultation, currently every 3 months, I never know the correct questions to ask.

So can you suggest what to ask? It might help others in my position.

Here is what I think at the moment are the key questions:

What sort of symptoms would make you consider treatment (I think I know the answer but no harm in asking] ?

What sort of treatments would be open to me (e.g. new ones like many discussed on the list - I even forget the name of the front line drugs now, I almost said ibuprofen ;-) As I cannot remember the spelling I cut and paste them: Rituximab (Rituxan) - Ibrutinib (Imbruvica)giving away my secrets.

Can I know more about the genetic side (Gene deletions etc) presenting in my case and how important is that for future treatment? [How is it best to ask this question considering it is UK, NHS- which I never criticise, by the way, though am worried about its state of health!]

[Obviously] Wbc - (But I roughly know this] and cbc - (I am slightly anaemic but of a level concerning my consultant)

Anything else?

Thanks - hope this is of interest to others in same position,

3 Replies

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  • I would start by seeking out a CLL specialist at a major research hospital, like St. Barts, Marsden, Southampton, Bournmouth, Leeds., Oxford... and others

    They will have the knowledge to take you forward in your journey.

    ~chris

  • Hi Davdow,

    This is fairly straightforward in terms of describing treatment options;

    cancer.org/cancer/chronic-l...

    In your situation I'd be asking your Consultant when he anticipates the need for further treatment for you. I'd be asking what his recommendation would be based on your previous treatment, the serious problems you had with nausea then and whether cytogenetic testing has been done to guide and individualise your future treatment options. I'd be particularly asking about eligibility for Ibrutinib in that you're not treatment naive. Have you had FISH testing and do you know your mutational status for instance?

    I'd probably be taking Chris's advice and seeking out a CLL specialist at this point to find a more individualised response.

    This from Dr. Sharman discusses 'when to treat'

    cll-nhl.com/2012/12/when-to...

    From a personal point of view having been dx nearly 5 yrs in May, the 'numbers' won't be my prime consideration but I'll be very persuaded should my ALC double in 6 months (as they're already well over 30). Frequent infections (especially hospitalisations), serious weight loss, debilitating fatigue and or drenching night sweats would also be constitutional symptoms that would make me have the conversation. A drop in platelets and red blood cells/haemoglobin would have me concerned about my bone marrow and spleen particularly if anaemia was becoming a problem. So essentially,

    Evidence of progressive marrow failure as manifested by the development of, or worsening of, anemia and/or thrombocytopenia. This article although dated, is excellent is describing all things splenic from Chaka Venkat;

    updates.clltopics.org/706-e...

    I'm also keeping an eye on my immunoglobulins (antibodies) as they're starting to drop. I'm not sure if you regularly have yours tested but it's a question for your Consultant.

    webmd.com/a-to-z-guides/imm...

    In terms of the question you ask about understanding chromosomal deletions, you may find this article helpful.

    cll-nhl.com/2013/11/11q-del...

    So basically Davdow, (armed with the information contained in the links), in relation to anticipated treatment, I'd be asking my Consultant;

    When?

    How?

    And what cytogenetic tests will be carried out to individualise the treatment?

    Hope that helps a little. Best wishes,

    Newdawn

  • Thanks so much for your excellent advice (both of you); I will take a copy with me to my next consultation. I am probably not near needing treatment, but it is good to plan in advance, so I might take up the advice to visit the nearest specialist, in my case it will be Dr Hillman at Leeds - I met him when I first needed treatment and he was excellent.

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