What topics would you like to see covered and what medical terms would you like explained on this site?

Recently, some members have asked for site content that better suits new members, etc. When you are suddenly diagnosed with CLL, you are exposed to a whole new language, with words and acronyms you've never heard before. With ASH2013, there will be the inevitable technical coverage that will unavoidably be using specialist jargon. What specific topics would you appreciate explained at an introductory level, so that you can gain more out of the ASH related topics and other more advanced material on this site? What terms do you keep stumbling across that you aren't sure of? While checking unknown terminology via an on-line dictionary may be helpful, sometimes how it specifically relates to CLL may not be covered.

I can't promise that your question(s) will be answered, but hearing your concerns will at least provide the regular site contributors with some ideas on what will be of interest to many. And if you think your question isn't worth asking, just try it and see how many others respond thanking you for raising something they were also wondering about ;) .

Neil

17 Replies

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  • Good question Neil and I hope it allows people to be honest without embarrassment about terms that are baffling. But there are so many in CLL! Even the global array of different organisations can require follow up research.

    Dependant on which country we hail from, it seems that we receive different levels of information as to our individual genetic profiles. In honesty, I sometimes read this and other sites and think, how do American patients know all this about their condition? By this I mean deletions, levels of, 'expressions', mutated, unmutated etc. Of course it comes from FISH genetic profiling (never sure if I'm even using the right expressions) which many of us have neither had nor wish for at this stage. But we hear so much about the significance in terms of survival rates, unsuitability for chemo with certain deletions and clonal evolution (how genetic make up of cells can change over time?) that I think it would help to have some kind of simplistic explanation of these terms.

    And of course the ever changing array of medications and treatments with unpronounceable names! Names that change from letters to numbers which confuse even more. A simple glossary would help because it's a changing landscape and terms like kinase inhibitors, monoclonal antibodies etc. have me reaching for Wikipedia!

    So as a first start suggestion, l think it would help if we stopped assuming that members always understand the significance of deletions/different treatment types etc. and we include bracketed explanations of acronyms and technical terms. Many won't need it but it would be enormously beneficial for those of us who do.

    (ASH - American Society of Haematology) :-)

    Warmest regards,

    Newdawn

  • Newdawn

    I agree it can be very intimidating starting to understand CLL. In fact even the researchers have some ways to go, and new discoveries are be made every few months.

    It is important to understand that CLL in the U.S. is handled somewhat differently than in other countries, and blanket prognostic testing may not be available, or may only be available on a 'patient need' basis, often just prior to treatment in most countries.

    I find the booklet from the Leukaemia and Lymphoma society to be the best overview available to patients. Start at page 5, much of the introduction is U.S. specific.

    lls.org/content/nationalcon...

    ~chris

  • Appreciate that Chris, I find that booklet from the Leukaemia and Lymphoma Society incredibly helpful and comprehensive but I must have an older version. I recommended it to a newly diagnosed CLL'er recently but as you say it's rather more for the US market. Incredibly helpful though and understandable.

    Have just read this updated booklet through and it contains an absolutely excellent glossary of terms and explanation of various treatments (including up to date treatments) which I could recommend. Highly informative.

    Thanks Chris. I'll certainly be using this as a reference and to update my knowledge.

    Newdawn

  • Yes, this online version is a recent revision and it has been edited/vetted Dr. John Byrd from OSU... a renowned CLL Expert. :-)

  • Perhaps we could create a non scientific day for real people talk? A moratorium on Mondays? Call it "Monday Matters" for example? When research talk is not encouraged and we shelve the science? Just concentrate on each other?

    On the topic of understanding terminology; hopefully a qualified medical professional is reading and can help with producing something that will be of use for easy reference to aid people understand the vast array of terms and jargon used in the fast changing speak of CLL.

    Unfortunately most are at ASH (American Society of Haematology) conference in the US at the moment.

    These guys are pretty busy so pinning them down to produce patient info is difficult, this we are experiencing as we look to provide current understandable information for reference on the CLLSA website as it is redeveloped in the run up to July.

    I would like to remind everyone that this on-line community facility here is a "common room" for want of a better term, for those affected by CLL to discuss and share issues and questions together to aid with day to day living as well as learning.

    Part of the problem is that there will be discussions carrying on at that involve different levels of understanding and too many complex topical conversations causes an imbalance and prevents those who do not understand from gaining knowledge or the confidence to post their own discussion or question.

    To reset this imbalance can i ask members to start sharing again if they can and everyone join in to give confidence to each other.

    The group needs to make it easy for people to come forward and generate content to aid members share day to day life issues, worries and questions together. This is what this facility should be doing. Aid each other live with this condition by sharing experience with people who can relate and sign post to information not force it upon each other.

    It would be impossible to explain things always in a way everyone can understand but as Newdawn suggests we can try to make our language understandable in the majority of cases. [I for one will work hard on my own contribution ]

    As Neil suggests in his post can we make it easy for people to join in and share with each other by starting threads that people wish to contribute too? Please offer your suggestions if you have any on your mind..

    Perhaps we could create a non scientific day for real people talk? A moratorium on Mondays? Call it "Monday Matters" for example?

    (let me know what you think?)

    We are only seeking ways to let everyone know we know they are there and are struggling to understand some of the content and it is also a little one sided.

    we can readdress this together. of course it is scientific week with the "nerds" and i count myself as one excited by what may come out the States gathering of experts this week. Traditionally it is the tme when we can all discuss this together, But yes Newdawn I will take on board a lot of this may be hard to understand or just plain boring to some.

    I do believe what we can do is live better with CLl and it is us together here that can assist this.

    Thank you for this thread Neil

    Nick

    .

  • I realised when I posted Nick that it sounded as if I was advocating a medical/scientific 'dictionary' of terms to be complied and whilst that would be really helpful, it's perhaps not realistic to expect anyone to do it in very understandable terms. There are of course 'glossary of terms' available but somehow it's impossible for knowledgeable people not to use complex descriptions that creep into general CLL usage.

    I think what I was really getting at is more recognition that certain things need bracketed explanations. I appreciate some will find it totally unnecessary and perhaps even patronising but I like your suggestion that we post in a way that draws others in with more confidence. That will only happen if people feel able to ask in simplistic terms at times when issues seem shrouded in complexity. The people who must nod and say, 'that's what I wanted to know too!!'

    I certainly want to learn and see this as one of the primary goals of the site but some of the scientific articles are at a very high level and I always find it helps if original posters give some kind of précis as to content. And I think that's maybe different to the 'kitchen sink matters' that we need to air to help our day to day issues of living or caring with CLL. So the social/emotional/policy type stuff can co-exist on the site as long as the scientific content isn't so highbrow that it makes people run from contributing at all. And in honesty I've had people tell me that they do...:-(

    So let's have a simple question thread. Anything people want to ask about CLL. Doesn't need to be written in clever academic language. No judgements or curt answers. I'd think of it as the KISS thread...'Keep It Scientifically Simple!'

    Maybe that's what we need following the ASH conference (as described above). A thread to jointly learn from what was discussed and a chance for the nerds to impart what came out of it in words that won't fry our brains! Just a suggestion because knowledge is our greatest weapon in all this so let's find a way to share it at a level everyone can understand and build on.

    Newdawn x

  • Love the idea of a KISS thread...'Keep It Scientifically Simple!'

    thanks

    Nick :-)

  • I read alot about scientific terms etc and I agree fully with a better understanding.

    What I would like to see is more sharing of 'howto' information. Let me explain, I've read about diet and eating, I've read about monitoring etc, what do people do and not do? Some of the diet docs are for non-UK (actually USA) and some are guided by neutropenia. Either way, how have they been interpreted successfully by us.

    I'll give a couple of examples by way of intro.

    1: checking my health. I bought electronic thermoneter, scales and blood pressure monitor that spync with my iPad and take 10 mins out eavh day to do do these readings that I can share with my GP and consultant if need be.

    2: Based on reading about diet i no longer eat smoked salmon, and blue cheeses. I also moved from a glass of beer to a glass of wine as beer now seems to upset my stomach more (except in small quantities).

    3: i seem ok with spices so my favourite curry house is still on my visit list.

    Just general howto (live life happily) that work for me.

    Rob

  • An interesting comment you made about blue cheese… Why do you consider it bad for health.??

    I had always been told that the Victorians made blue cheese popular, as it was eaten at the end of a meal ‘ to aid digestion ‘…

    And to aid digestion I am thinking that it is in effect a Probiotic..?

    Note here that my discussion does not include some side effects of Blue cheese which are that many supermarket deli-counters are extremely unhygienic, and that a neutropenic diet might exclude items such as blue cheese.

    Dick

  • Hi Dick,

    Well, first I was told by a nurse when I was being prepped for FCR last year. Then I also found it in a Seattle CancerCare Alliance doc - Diet Guidelines for Immunosuppresed Patients in the Do Not Eat column.

    "Cheeses with molds (such as blue, Stilton, Roquefort and Gorgonzola).

    I'd love to be proven wrong on the blue cheese, I soooo miss a good Stilton.

    rob

  • As general advice it makes a lot of sense, but I suspect the real reason is the poor handling at the supermarket deli-counter rather than the actual cheese itself.

    There are many other cheeses that have a mold growth on the outside and some of these bacteria are almost certain to be pushed into the cheese by the actions of cutting with a knife..!!

    The usual rules apply I think, be aware and careful, but don't go to extremes. Many bacteria are actually beneficial and understanding the huge quantities of intestinal bacteria is a whole new developing science.

    Dick

    PS I eat LOTS of cheese both blue and others..!!

  • Many with CLL will require special diets due to immune complications of CLL, especially during and after treatment people may be short term or longer term neutropenic.

    What you can eat depends on your own immune system status.Your doctors will tell you.

    Recommendations for those who are very immune compromised and neutropenic.(Neutropenia means a low neutrophil count)

    Dietary advice for patients with neutropenia - Leukaemia& Lymphoma Research patient information booklet.

    leukaemialymphomaresearch.o...

    About cheeses and dairy product use.

    Specific food safety advice for

    a neutrophil count of 0.5-2.0 x 109/litre

    Avoid

    Soft ripened cheese e.g. Brie,

    Camembert, goat’s cheese,

    paneer and labnah

    Blue veined cheese e.g. Danish blue

    and Stilton

    Probiotics, live or bio products

    e.g. live yoghurts, probiotic

    containing supplements and drinks

    All unpasteurised dairy products

    e.g. unpasteurised cheese such as

    parmesan or milk sold on local farms

  • Hi Rob,

    Also on this subject..

    My CLL leaves me with an enlarged spleen AND liver. Thus I do not stress my liver by eating spices of any kind.

    I did some tests at the hospital and proved that the spices raised my Bilirubin levels in the blood. A high bilirubin level can lead to digestive problems such as IBS, Irritable Bowel Syndrome.

    So no curries for me, and no herbs and no spices....

    With each of my blood draws they do a Bilirubin level check.

    All just goes to show how ' heterogeneous ' this disease can be, We are all different..

    Dick

  • One of the advantages of having frequent blood tests and sufficient knowledge is that you can conduct experiments on yourself - provided you are feeling well enough to do so :) !

  • Hi I think we need the whole array of content. From the newbe to the science nerds. They all creat this wonderful community. So long as we are welcoming to new userers (and I think we are) there should be something for everyone. Best wishes

  • Hi All

    hope this makes sense. I discovered this site after my partner had already been through chemo (FCMR) so for us the immediate danger was over (!). I 'watched and waited' reading lots of posts and responses and I learned. You don't know what you don't know and i now feel like I have learnt a lot. I still don't know all the terminology (and tend to google words I don't know when reading things). Some new people come on straight away and some (like me) may be need to work up to it but that is no reflection on the site I am just not a face booker, blogger, twitter person etc and don't always feel comfortable with IT.

    I haven't felt daunted by terminology, sometime knowing the correct terminology is advantagous, I have been struck by how supportive everyone is. I first posted a couple of months ago asking the question 'why do we need the pneumonia vac' (again don't know what you don't know) and in 3 years our GP had never advised this vac. The response I received on here was brilliant (thanks again AussieNeil) When partner asked the locum he was seeing about the vac he was surprised he hadn't already received it. Finally having vac today as unforunately partner has not been well with chest infection so didn't want to risk it while ill.

    It may be helpful to have a factsheet with common used acronyms, terminology and a plain english guide but overall I think please keep doing what you're doing and when we ask questions that have been asked before advise and link us to the guidance. I also agree with both newdawn and oldboyredw's comments

  • Great topic and discussion.....even after a year of on/off trying to get to grips with CLL and individual paths, I still feel I know v little (except for the AIHA path I have gone down - there is material around if you look for it and people (including this site) to direct you there: even down the rarer paths).

    The CCLSA site is great and good to head more development coming - at start there are two key messages that must be simple and comprehensive - don't panic (slow moving / usually W&W or whatever we might call it in future) and understanding bloods (including when treatment and the excellent Sharman/?LeClare videos). I suspect both these areas could be improved in terms for making it v simple to understand. Trouble on bloods is that it looks like different centres (even within one country) measure different things/ways.....which makes it unnecessarily complex!

    Then you go off down the individual track....so it becomes much more complicated.

    Personally, I have not yet really started to look at treatment side (hopefully years off....). However, Anna's talk at Oxford split treatments into three categories, depending upon what they targeted in the individual cell (mass-destroyer/get nucleus (chemo), something stopping communication between nucleus and cell outer wall (so stopping it pass on dodgy messages), and something targeting bodies on cell outer wall (so taking out bits that pass dodgy messages into other cells). IS there a simple map/explanation on where each treatment targets / why that targeting is good

    Bottom line is, we can not hope to understand all the medical material, but we do need to understand what is happening so that we can challenge/be active participants.

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