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

There is no proven link between Agent Orange and CLL, and anecdotal scribblings are no help to CLL victims.

Roxy the dog (talk) 13:27, 2 July 2008 (UTC)

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). —Preceding unsigned comment added by 89.240.224.9 (talk) 15:19, 14 January 2008 (UTC)

I note with some interest that the link to Prof Hamblin's blog was removed about six months ago. As he is one of the top three experts in the world on this subject, this is an amusing edit. The editor at the time cited "too much religion, not enough CLL" as the reason, but it should be noted that there are well over 100 posts on CLL, and the information provided there is of a far higher quality than virtually everything else in the links section. Like the Autosigned comment above, I would suggest that the rules are applied fairly, if they are to be applied at all. As a patient, I would hope that those who maintain this entry remember that in this modern world the internet is where many newly diagnosed people go for good information and help, and that for good or bad, this wiki page is one of the first ports of call. There are, not including the UK CLL forum, Three patient chat groups in the main page links section. The UK CLL Discussion Forum is an established forum that has recently (Jan 2008) changed its web URL, and upgraded its software. It was associated with the charity UK CLL Support Association, which remains linked (but in the wrong category) on the main page, but is now independent of that charity. Please leave the new link to the UK forum linked.Roxy the dog (talk) 12:25, 15 January 2008 (UTC)

WP:EL says: "Links to blogs and personal web pages, except those written by a recognized authority." So there was no need to remove Prof. Hamblin's blog.

WP:Reliable_source_examples#Are_weblogs_reliable_sources.3F says: "Weblog material written by well-known professional researchers writing within their field, or well-known professional journalists, may be acceptable, especially if hosted by a university or employer...

If you agree with this, then linking to blogs is not an all-or-nothing thing. It should be done on a case-by-case basis. Nbauman (talk) 22:54, 15 January 2008 (UTC)

I would like to edit this section, just to tidy it up a little, and to replace both Prof H's blog, and David Arenson's. The Prof's blog appears to qualify as per Nbauman's comments above, and David Arenson's is a balanced and sensible one detailing his own experience, and also rational assessment of many CLL related issues. David is also considered to be one of the most knowledgable non-professionals in the world. The UK CLL Support Association link should move to the correct category, and the link to the ACOR site should really go to the CLL page, rather than a broken start page to the ACOR main site.

I hesitate to edit without at least some consent from wiki mavens, who appear to have jumped on the addition of a link earlier this week. As I previously disclosed, I am a CLL patient, and have done no other editing on wikis.Roxy the dog (talk) 00:18, 18 January 2008 (UTC)

Unless WhatamIdoing or somebody else posts an objection here, with a good supporting argument, I think you can go ahead and re-insert the link. My only objection is to links to commercial web sites, that are primarily trying to promote a doctor, a practice, or a product. Nbauman (talk) 03:35, 19 January 2008 (UTC)

External links redux

Sorry, I didn't have this page on my watchlist. Yes, of course I object. Wikipedia's external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including internet chat boards and e-mail discussion groups. Because I realize that most normal editors haven't spent much time with these policies, please let me provide specific information from the guidelines:

• This page, which applies to all articles in the entire encyclopedia, says that links "to social networking sites (such as MySpace or Fan sites), discussion forums/groups (such as Yahoo! Groups), USENET newsgroups or e-mail lists" are to be avoided.

• This page deprecates ""helpful" external links, such as forums, self-help groups and local charities."

• This medical-specific page reinforces the pan-Wiki rules, with a note that "All links must meet Wikipedia's external links guidelines, which in particular exclude discussion forums."

Wikipedia is an encyclopedia, and while it may occasionally be useful to patients or their families, it is not an advertising opportunity for support groups. Please do not re-insert links that do not conform to the standard rules. Any editor, BTW, is welcome to read all of the rules and perform an "audit" in the remaining links. Thanks, WhatamIdoing (talk) 21:22, 16 April 2008 (UTC)

My opinion is all or none. So I have placed The CLL Forum back on external links. This is not a chat site or discussion forum. It is an encyclopedic resource with over 2.5 million page views. CLL is a rare cancer - please allow us who are living with this incurable disease some latitude. —Preceding unsigned comment added by Steve Madden (talk • contribs) 21:56, 28 June 2008 (UTC)

Lymphomation.org is hardly one of the most comprehensive resources for CLL, it is barely used by CLL patients, and therefore I have removed the link. Several of the links that have been removed (discussions above) are of far greater value to patients than this one. If the point of Wikipedia is to have "politically correct" links, they should at least be of equal or greater value than the "politically incorrect" links that have been removed. —Preceding unsigned comment added by Lymphomaniac (talk • contribs) 19:39, 2 July 2008 (UTC)

I have no objection to removing Lymphomation.org. However, the standard for evaluating external links is not their popularity with patients. It is their utility to the general reader -- a hypothetical person that is specifically neither a patient nor a professional. WhatamIdoing (talk) 16:42, 5 July 2008 (UTC)

Deleted UCSD protocol

I deleted the reference to the UCSD protocol http://www.eurekalert.org/pub_releases/2008-02/uoc--gtp021108.php because it's just basic research, and they haven't demonstrated that there's any benefit to it (although it is newsworthy that it's in human trials). If you went to the ASCO web site and looked at their annual meeting you'd find hundreds of studies like this. We don't have room for them all. It might be worth discussing how to deal with basic research like this, but I don't think it belongs in this article. Nbauman (talk) 01:17, 12 February 2008 (UTC)

New guideline

There is a new guideline: doi:10.1182/blood-2007-06-093906 JFW | T@lk 20:19, 22 June 2008 (UTC)

The Epidemiology section is incorrect. see http://bloodjournal.hematologylibrary.org/cgi/content/abstract/100/2/635

Would the contributor consider changing ths? —Preceding unsigned comment added by Steve Madden (talk • contribs) 22:30, 28 June 2008 (UTC)

Disease "of the elderly"

Under Epidemiology I have changed "CLL is a disease of the elderly" to "CLL is a disease of older adults." "Elderly" is a relatively nonspecific term; many CLL patients would not be considered elderly but nearly all would be considered "older adults." Lymphomaniac (talk) 20:02, 2 July 2008 (UTC)

No longer T-cell?

What's the authority for saying that "so-called" T-cell CLLs are a separate disease group (and not a subset of CLL)? Who recognizes it?

eMedicine still considers T-cell CLL as CLL as of October 2008. eMedicine Chronic Lymphocytic Leukemia Approximately 2-5% of patients with chronic lymphocytic leukemia (chronic lymphoid leukemia, CLL) exhibit a T-cell phenotype.

Is this a consensus or is this still under debate? Is it something that the broad oncology community agrees on, or is there a different perspective among sub-specialties or disciplines? How do you reconcile this with the eMedicine authors? Nbauman (talk) 18:43, 3 February 2009 (UTC)

It is the consensus of the National Institutes of Health and the World Health Organization's ICD-O. Please note the difference between Leukemia,+T+Cell,+Chronic at the U.S. National Library of Medicine Medical Subject Headings (MeSH) (the 2007 version) and Leukemia,+T+Cell,+Chronic at the U.S. National Library of Medicine Medical Subject Headings (MeSH) (the 2009 version). Per the latter link, T-cell prolymphocytic leukemia is "A lymphoid leukemia characterized by a profound LYMPHOCYTOSIS with or without LYMPHADENOPATHY, hepatosplenomegaly, frequently rapid progression, and short survival. It was formerly called T-cell chronic lymphocytic leukemia." --Arcadian (talk) 18:27, 4 February 2009 (UTC)