Talk:Chronic lymphocytic leukemia

Question

Question on disease classification:

It mentions that CLL is proliferation of B-cells, and that the so-called T-cell CLL is now understood to be another disease group - how about the third type, NK-cells (natural killer cells) -- is NK-cell CLL more like B-cell CLL or the new type of T-cell disease mentioned in the article?

- Deniz

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Q: "I would like to know the life span of chronic Lymphocytic Leukemia?"

I think that's a tough question to get at because there's a wide range. I wish I knew.

Who am I? I'm the first contributor, otherwise known as IP address 68.169.185.49. My wife was diagnosed with CLL in 1999... and I finally worked up the gumption to post a wiki about it, mistakes and all, in feb 2004, not long after she was treated for first time using the FCR protocol. She's since been treated twice since then with rituximab. So she's 7 years post diagnosis and right now doing well (she's 50 now, relatively young for a CLL patient). Not sure how many times Rituxan is going to to the trick for her or if she'll be able to tolerate it (she's had some Stevens-Johnson syndrome problems.) Also not sure what the next step will be for her.

Anyway, my aim then was to provide a short piece that touched on the key things a new CLL patient is likely to encounter, in not-too-complex language. I figured there's plenty of scholarly writing about CLL out there for the Googling and linking-in for people who want to be amateur hematologists (as seems the fate of CLL patients and their families) without snowing them under with all the molecular biology detail.

So when I came back and looked at the article today came away with the feeling that the article has become become too technical right off the top. I have specific issue with "Risk Stratification" (wha?) - that's a horrible paragraph that doesn't fit with the rest of the body. I may have a crack at this one soon if someone doesn't fix it.

So my simple plea to you hematologists out there: really, really resist the urge to indulge in jargon or highly technical detail. I know it's important in your work, but I think it's out of place for a basic wiki like this.

thanks -

- mister slack

p.s. - did I answer your question?

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This is a good point - the wiki serves the need of patients and students alike, and all articles implicitly assume some degree of previous knowledge, sometimes it is hard to know where to stop. I think though that the general page should be jargon-free, with links to more in depth articles within Wikipedia for each section (a little like how they do the pages for countries - a seperate page for economics, demographics, military etc. with the general article not overwhelming the reader).

Autoimmunity

Article[1] - pernicious anaemia is only autoimmune condition that increases risk, while rheumatic heart disease decreases risk. JFW | T@lk 22:06, 21 June 2006 (UTC)

I know a man who was diagnosed in 1977 and was in his early 50's at the time. As of January 2007 he is stll alive and is doing well for a man in his 80's. He has been treated with chemo numerous times.

In his own words: "A lot has happened since I started with a Dr's first words that I had Leukemia and he thought I had about 3 mo's to live. A visit to a specialist and more tests gave me my CLL diagnosis and a lot more hope. As I am now 81 you can see that what you are asking involves years of blood tests and Doctor visits that still go on every three or so months.One thingIhave always had is my faith that all will be well. My ups and downs mentally I have always tried to keep to myself. My condition has been always known to family and friends and to this day can be the subject of questions and conversations.

I find that Doctors have different opinions on which way to treat CLL and even at this stage of life there are decisions to be made on what to do.

My recent visit to the Moffitt Cancer center in Tampa, Fl . where the Dr said you are a lucky one and I don't recommend changing a thing unless there is a sudden change for the worse.There are a lot of new drugs and I never know how they are going to react with different individuals. They could make things worse .I had gone there as my Fla Dr wanted to give me aggressive Drugs to try and wipe out the disease. I don't go to him any more. I would say to you that unless they make new discoveries you will be with CLL for the rest of your life and briefly I say don't let it bother you. I have done always what I have wanted to ,fortunately the Chemo I have taken didn't bother me and when I stopped it the changes were not dramatic.

I suspect that I am on the edge of starting chemo again but that doesn't bother me much.

My first Dr , when I asked him how long I had ,said did you see that man who just left he has CLL and is 90 years old. Just think that could be you."

Yes, that will be me. I am 42 and have a subset of CLL with an excellent prognosis.

72.145.177.118 02:51, 27 January 2007 (UTC)

Auto Immunity an unknown

Staffordshire Rheumatology Centre, Haywood Hospital, Stoke-on-Trent, U.K.

There is evidence for an increased incidence of lymphoproliferative disorders in patients with rheumatoid arthritis (RA). We present the clinical features of 4 patients with RA and chronic lymphatic leukaemia (CLL) which, occurring in a population of 1505 RA patients, represents a significantly increased prevalence of CLL (p less than 0.05) compared to the general population. These patients had significantly lower natural killer cell activity than matched rheumatoid controls (p less than 0.05) or normal controls (p less than 0.01) and we discuss this as a possible mechanism of association.

Chronic Lymphocytic Leukemia (CLL) is a subgroup of Chronic Lymphoid Leukemias. Chronic Lymphoid Leukemias inculdes many different types of leukemia, like CLL, PLL, HCL, Sezary, ATLL, LGLL...Crystal0619 01:05, 11 March 2007 (UTC)

Too Tecnical for a General Audience

My uncle was just diagnosed with CLL, so of course I googled "CLL" to find information. This article comes up second on the google search, and the disambiguation page for "CLL" comes up third. Its google rank is likely an indication that this is an article people are reading to get information after their loved one, friend, self etc. receives a diagnosis of CLL. Keep in mind that the laymen that will be reading this, like myself, may be in an emotional state after hearing the diagnosis; thus, it is especially important that this article is well organized and accessible.

Many of the technical terms need links to existing articles. As written, the article seems more geared toward the medical community. There is a ton of useful info here, but little of it will make any sense to the layman. Can we strike a balance? --JenniferOlivia 03:27, 11 April 2007 (UTC)

Possible cause of CLL

I have been allergic to preservative 211(sodium benzoate) and benzoic acid(210) all my life. During a two year aerial spraying program(2002-2004) of an insecticide over my home I developed CLL and multiple parts of my endocrine system failed(all appear to be linked to benzoic acids). The insecticide contained benzoic acid and possibly methyl paraben. The U.S. government recognises that Vietnam soldiers got CLL from exposure to pesticides and herbicides. Agent Orange used in Vietnam blocked the bodies ability to detoxify benzoic acid. Also used in Vietnam was the herbicide Dicamba which is an endocrine disrupting benzoic acid herbicide. Over the last year I have been avoiding sodium benzoate, benzoic acid, folate(para-aminobenzoic acid), and importantly, salicylates(2-hydroxybenzoic acid)in my diet. I also avoid any parabens and car exhaust fumes as much as possible, as in my country they contain benzoic acid from benzene burnt in the fuel. My blood tests show that the CLL has not progressed over the last year since my diet restrictions. I am not a doctor or scientist but what I have talked about above and other evidence I have suggests a link between the benzoic acids and CLL in people with allergies to benzoic acids.

Grant Philpott

Balance

There needs to be a balance between the technical and general information aspects of this article. As it appears now, I don't believe it is very useful to the new CLL patient, or to the student who is checking out Wikipedia for a "first look" in their research. Since this is the most common form of leukemia, I think the article deserves a technical spin. A few of the wonderful hematologists and oncologists out there could help this article out a lot...and give us a look at the disease that they think would be useful to their patients and to their colleagues in general practice.

My dad succumbed to CLL just 4 years after diagnosis at age 53. I understand the original author's concerns, but for CLL support and general information, the Leukemia & Lymphoma Society, or Web MD would be my first stops.

Suggestions: Could someone discuss the genesis of B cells in the bone marrow, and what seems to make the stem cells go haywire? Are the different chromosomal deletions the result of "sloppy separation" during crossing over or mitosis? Is there a genetic predisposition evident, or is it random or environmental?

Last, (out of pure curiosity), could there be a connection with alpha 1 antitrypsin deficiency?

Rotkopf1Rotkopf1 00:16, 31 July 2007 (UTC)

Br J Haem

This month's Br J Haem has an entire issue full of free papers on the subject of CLL alone! Link JFW | T@lk 01:59, 23 November 2007 (UTC)

My Experience and View of the Subject

I have had CLL since 1992 and am probably not your average reader. There is nothing here that is difficult for me to understand. I find the information well organized and appropriate. It is better information than many Oncologist possess, that is unless they are a specialist. In most cases, a CLL patient should seek out a CLL specialist for treatment and then be followed up by a Hematologist/Oncologist. It does take time and work to reach the level of understanding that is presented here but it should be the goal of every CLL patient to become that well informed. Learning that one has CLL is one gigantic show stopper but it is very empowering to have the knowledge presented in this article when dealing with this disease. With this knowledge one can participate in the decision making process, whether it be watch and wait, a treatment regime or a clinical trial. I would suggest changing the sentence about needing treatment based on high white counts. Knowledgeable Oncologist never treat high counts but follow the recommendations of the NCI and/or using one of the two staging methods mentioned in the article. I would be pleased to share with anyone who has questions regarding CLL. --Jim Lawson 02:44, 8 December 2007 (UTC)

External links

External links to patient support groups (especially online chat boards) and blogsare normally not accepted on Wikipedia. Please read the external links policy and the specific rules for medical articles before adding more external links. WhatamIdoing (talk) 00:41, 13 January 2008 (UTC)

I generally agree with you, and with that policy, but ACOR seems to be a special case, and might deserve an exception. It's not exactly a patient support group, but an index to patient support groups, and reliable sources seem to recommend it. (Just as Steve Dunn's CancerGuide.org is/was a special case.)Nbauman (talk) 18:27, 13 January 2008 (UTC)

I accept that it may be policy not to accept patient support groups or online chat groups, but if the rule is delete them, then ALL of them should be deleted and not just target one of them. (just getting my head around this Wikipedia).