Talk:Multiple myeloma
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[edit] Can someone clarify the assessment of bone lesions used in staging, please?
The scheme as outlined here differs from the original, described in Durie and Salmon (1975), in which bone lesions were graded on a four point scale, namely: Normal bones (0); Osteoporosis (1); Lytic bone lesions (2); Extensive skeletal destruction and major fractures (3).
Stage I included normal bones (0) or solitary plasmacytoma, stage II by implication included osteoporosis (1) or lytic bone lesions (2), and stage III included scale point (3), now defined as 'Advanced lytic bone lesions' in the table describing the staging system.
Does anyone have a reference that supports the grading of bone lesions as laid out in the current Wikipedia article? I note that this scheme is that used by the CIBMTR, except for the inclusion of osteoporosis in stage I which the original scheme of Durie and Salmon include in stage II and which the CIBMTR ignore altogether.
As ever, there is nothing new under the Sun and this point has been raised elsewhere, although not answered as far as I know, before (see http://radiology.rsnajnls.org/cgi/reprint/234/1/313.pdf). However, the current scheme is not based on the Durie and Salmon PLUS staging system, in which lesions are determined using MRI and/or FDG PET, referred to in the Mulligan letter.
Any pointers would be appreciated. By the way, please tell me if this is not the right forum for raising this question and where is.Johnacle (talk) 00:46, 2 January 2008 (UTC)
- I'm not sure how the grading of bone disease plugs into the full D&S system. JFW | T@lk 10:19, 28 March 2008 (UTC)
[edit] Rituximab
13-22% might respond to anti-CD20 monoclonal antibody: http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2141.2008.07024.x JFW | T@lk 07:10, 17 March 2008 (UTC)
- doi:10.1182/blood-2007-10-121285 - numerous conditions seem to increase myeloma risk as a nonspecific trigger. JFW | T@lk 00:39, 25 March 2008 (UTC)
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- http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2141.2008.06997.x - PAD (Bortezomib, doxorubicin and dexamethasone) as first-line treatment does fairly well. JFW | T@lk 10:11, 28 March 2008 (UTC)
[edit] Bob & Vince
Kyle & Rajkumar about the history of myeloma. http://bloodjournal.hematologylibrary.org/cgi/content/full/111/6/2962 JFW | T@lk 05:18, 8 May 2008 (UTC)
[edit] heavily weighted towards a clinical perspective and treatment
I understand that many people coming to this page may be interested in the clinical evaluation of this disease, but I think it (the article) would benefit from additional information on the natural history. Surely there must also be a great deal of information available about (putative) etiology and biology of this disease that could at least be cited. DulcineadT (talk) 00:05, 11 March 2009 (UTC)
- I agree. Please find a useful source. The article tries to address the common cytogenetic and immunohistochemical findings, as well as mutations involving IgH/IgL. We should certainly write about the bone microenvironment, as this is relevant with regards to the mechanism of action of thalidomide. JFW | T@lk 07:12, 11 March 2009 (UTC)
[edit] External link
I find http://www.myelomaforums.com/ not an external link we want to exclude. There is no formal guideline to discourage support groups but previous discussions on WT:MED have discouraged them. The person who added it is the site maintainer. --Steven Fruitsmaak (Reply) 07:47, 21 April 2009 (UTC)
- Forums, discussion groups or other user-generated sites are usually poor sources of authoritative information. Obviously some are exemplary and well moderated, but others are the nidus of hype and untested treatments. This particular site has reasonably well-written content that more or less duplicates what this page is already telling. I think a broader discussion on WT:MEDMOS to generate some sort of general guidance would be very useful. JFW | T@lk 10:01, 21 April 2009 (UTC)
Guy's I really appreciate you at least taking the time to talk about it. My site does contain a lot of redundant information as do the other sites listed. However, each of us is truly trying to bring the best information to Myeloma patients. I may not have multi-million dollar grants or a PHD, but I can make a difference and give the Myeloma community a wonderful tool to help aid their fight. When people discuss their treatments they help others learn about the options available so they can consult their physicians. The physicians also use the forums as a tool to learn about patients and treatment options offered else where. I don't want to be rude, but flat out not telling people about my forums stops people from quickly finding valuable resources that have taken some patients years to find and time is very important when your fighting for your life. As a admin I respect what your doing and know your trying to keep wikipedia's image clean and have accurate information. I promise my site will be of value and a useful resource to everyone visiting wikipedia. Im 2 months in and patients have said things like "This is the best thing since color tv", "Where has this been all these years." and many many more praises. These comments tell me that my site is different and needed. I really need some friends to help me here since I dont have the million dollar budget. Please, please, please... Begging you! help me and the Myeloma community. 72.91.70.12 (talk) 03:11, 23 April 2009 (UTC)
- Rather than simply reinserting your link, could you wait until a clear consensus has emerged? You may need to involve other contributors to weigh in over here. As it stands, there is a longstanding opposition here to any form of user-generated or support forum like links on Wikipedia pages. There are numerous other ways to reach the "myeloma community", for instance through Google ads or by Facebook groups. JFW | T@lk 21:47, 25 April 2009 (UTC)
The only clear consensus that will emerge out of this is how sad of a human being you are. YOUR opposition does nothing to help the Myeloma community. Your bad for the image of wikipedia and should be removed from power. 72.91.70.12 (talk) 04:20, 26 April 2009 (UTC)
- Please avoid personal attacks and assume good faith. Being abusive will achieve absolutely nothing. If you expect us to carry your link, then at least have the courtesy to try and understand this website's workings. You have already succeeded at having the page locked from editing, and you are inches away from having your IP blocked. JFW | T@lk 07:22, 26 April 2009 (UTC)
Jeff we ready to unlock this section yet? Keep looking at www.myelomaforums.com and you will see that the sight is getting better and better and your making a mistake by not allowing my link. Also, it be nice if people could add content. 72.91.70.12 (talk) 11:34, 18 May 2009 (UTC)
[edit] RfC: Is myelomaforums.com link relevant for the links section of this article
- The following discussion is closed. Please do not modify it. Subsequent comments should be made in a new section.
{{rfctag}} Should an exception be made to allow Myelomaforums.com to be able to have a link on this article? 64.238.49.65 (talk) 21:21, 1 June 2009 (UTC)
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If you came here because someone asked you to, or you read a message on another website, please note that this is not a majority vote, but instead a discussion among Wikipedia contributors. Wikipedia has policies and guidelines regarding the encyclopedia's content, and consensus is gauged based on the merits of the arguments, not by counting votes.
However, you are invited to participate and your opinion is welcome. Remember to assume good faith on the part of others and to sign your posts on this page by adding ~~~~ at the end. Note: Comments by suspected single-purpose accounts or canvassed users may be tagged using:{{subst:spa|username}} or {{subst:canvassed|username}} |
- I think the case against an external link is well supported by my arguments above. The content is not expert-generated, and there is a longstanding opposition to support forums etc in medicine articles, as there is not always sufficient moderation on these site to make them even remotely reliable. Support forums are where hypes etc can receive inordinate attention etc. JFW | T@lk 23:39, 1 June 2009 (UTC)
All the content and resources on the front of my website come from doctors and subject matter experts. All the articles have links back to their original location and my members know their cancer. Now, I have seen a lot of other forums and realize why you have opposition to them, but my website is different and the admin (me) who is running the website is different. I have been fighting with you for a long time on this and it should show you how much I care and want good information out there for the sick. 72.91.70.12 (talk) 01:27, 2 June 2009 (UTC)
I agree that there is some degree of misinformation on the various Listservs and Websites devoted to Multiple Myeloma (MM). I understand that Wikipedia is supposed to be a source of GOOD information. So I understand your reluctance to link to "popular" websites.
But MM is a rare disease, about 1% of all cancers. It is hard for someone newly diagnosed to get any information about it. If they live in a rural area with few oncologists it is almost impossible for them to find a doctor who is up-to-date on MM. Even many Hematologist/Oncologists are behind the curve, since things are changing so fast. The experienced MM patients, and their caregivers, who populate Listservs and Forums can help Newbies find appropriate treatment.
I have had MM for at least 10 years (probably at least 15) but I was only diagnosed 7.5 years ago and the disease was quite far advanced (Salmon/Durie Stage IIIA) with lots of bone damage. If it were not for the IMF Listserve I would not have found an excellent Oncologist and would probably have died 7 years ago. Even with this excellent Onc it was touch and go for 6 months.
Someone newly diagnosed needs to get in touch with more experienced patients and caregivers to have the best chance of receiving good effective care. I hope a way can be found to allow a link to the MM Foruns. I will understand if this is not possible, but getting information to Newbies is the best way that experienced Myelomics can be of help. A link here would help this a lot.Probinuse2 (talk) 06:06, 3 June 2009 (UTC)
Myelomaforums.com is a very useful source of information about the disease by patients who have the disease. The forum is a very valuable asset to anyone concerned about myeloma. —Preceding unsigned comment added by 71.126.161.196 (talk) 02:20, 3 June 2009 (UTC)
I agree with the above user and think the listserve for Myeloma should be added as well. Please allow the addition of both resources. 72.91.70.12 (talk) 11:43, 3 June 2009 (UTC)
- Could I inform you all that this is not a vote or a popularity contest? What an RFC is intended to achieve is to clarify the use on the link in the context of Wikipedia policies and guidelines on the suitability of certain external links. None of you have addressed this. JFW | T@lk 19:59, 3 June 2009 (UTC)
JFW - Did you not say "You may need to involve other contributors to weigh in over here." and that is what we were doing. —Preceding unsigned comment added by 72.91.70.12 (talk) 22:09, 3 June 2009 (UTC)
- Other contributors? Well, no. You've rallied your pals, who have never contributed to Wikipedia before and have no knowledge of the policies and guidelines, let alone their implementation. JFW | T@lk 22:30, 3 June 2009 (UTC)
- It has a list of blogs which tend to be anecdotal. I would remove the link to this website. Snowman (talk) 22:44, 3 June 2009 (UTC)
- Oppose This website is of interest only to patients/their families, and Wikipedia is written for the general reader. We assume that a reader is smart enough to ask Mr Google about the existence of online chat rooms. The article already contains a link to DMOZ, which is more than sufficient advertising opportunity for any chat board. This link would violate WP:ELNO #10 (chat boards) and #11 (blogs) as well as WP:MEDMOS#External_links and WP:MEDMOS#Audience. It may be a very good website for its purpose, but it does not provide encyclopedic information and is therefore not appropriate for Wikipedia. WhatamIdoing (talk) 23:02, 3 June 2009 (UTC)
- Oppose. I oppose the inclusion of this link to your forums. The policies of wikipedia are that discussion forums should not be linked to. I have detected that people's motives are to help get much needed "help and information" out to people suffering from myeloma. Since this appears to be the motive why not use this energy to help track down important peer reviewed literature and information and help develop this particular article? You would "help" 100 times more people by developing the article seeing as probably only 1 in 100 readers of this page if that would ever click on the external links whereas if you develop this article then 100 times more people will get a good quality informative article. I believe that there should not be an exception to the wiki policies in this case however, I admit that I am not a doctor nor knowledgable about this disease so can't review your site from a medical point of view. I liked the suggestion of if you want to promote your site why not purchase google adwords or ask other websites of a similar topic nature to link to you etc? My suggestion is that you drop this ongoing argument and join wikipedia as constructive contributers.--Literaturegeek | T@1k? 23:08, 3 June 2009 (UTC)
Just a note to my post. Wiki is not meant to get "info out" or to be "medical advice", I was not advocating that but a good quality informative article does have the side effect of being an informative and educational especially for rarer diseases.--Literaturegeek | T@1k? 23:12, 3 June 2009 (UTC)
- Oppose per WhatamIdoing. Wikipedia was created as an encyclopedia for scholastic information. This site was intended for families and patients for Multiple Melanoma. It also clearly violates WP:ELNO. "It is hard for someone newly diagnosed to get any information about it" MM is not hard to find, all you need to do is take a simple Google search for it. There was only 2M hits on it. I think that would suffice as it can easily be found. Multiple medical websites such as Mayo, MedPlus, ect all have the disease in their glossaries. It won't be hard to find. Renaissancee (talk) 23:29, 3 June 2009 (UTC)
JFW, I thought that you wanted other peoples input. Im not trying to get people upset just help them. The reason I pushed for this website to carry my link is because this page is #1 in a google search and that means when a person lands here they read they have 1-3 years to live. When people are upset its a very hard thing to read and it be nice if they could come and instantly talk to people who are alive and doing well with the treatments. I hope you can understand why this is so important to me. I am not wikipedia and have no money this site is ran out of my garage so I cant do google advertisements or anything else like that. Best of luck wikipedia! 72.91.70.12 (talk) 01:35, 4 June 2009 (UTC)
- Wikipedia is not a place to self promote. Doing so is severely frowned upon, and can be punishable. Wikipedia policy is not something users just shrug off and ignore. They are there to make Wikipedia what it is today. Renaissancee (talk) 04:47, 4 June 2009 (UTC)
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- For 72.91.70.12: The important point here is that when readers come to this page, they do not have one to three years to live, because the vast majority of readers do not have multiple myeloma. There were more than 80,000 page views here just last month. There were not 80,000 new MM patients last month. Those few that do have MM can type "multiple myeloma support" into their FWSE very easily, and that should take them to support resources. Additionally, you are free to list your group along with any of the others at DMOZ link in this article: it's free (and supposedly easy). WhatamIdoing (talk) 05:36, 4 June 2009 (UTC)
All, from the eariler comments it sounded like there was room for debate as to if a website like mine could be listed and I was trying. Please go ahead and delete all the back and forth comments about this and close it out. I am already on the DMOZ on that page listed but I have yet to see a single person come from there. When I had a link on this page I was getting about 5 people a day who were new patients or family members freaking out. Its not a lot of people but every person we were helping is still a person. Since Multiple Myeloma is a rare cancer and people dont usually know of it until someone they know is sick or they themself are sick I think its fair to assume its those people coming. They may not be newly diagnosed, but they are still looking for information, but there is no real way to know. Thanks for everyones time. 72.91.70.12 (talk) 11:27, 4 June 2009 (UTC)
- Opposed with reservations I oppose including this link for two reasons. First, I don't wish for Wikipedia to become a search engine. That's a job best left to others. And second, I recognize a bias, here, that I simply cannot ignore. I must respectfully question its place in an encyclopedic article.. However, I have a reservation. I wish to distance myself from some of the other arguments I've read here. I get concerned when I hear Wikipedians apply Wikipolicy to sites other than Wikipedia. Wikipedia, by its own admission, limits its comments to those that are verifiable, unbiased, and unoriginal. That leaves others sites to do the important work of commenting on things that are unverifiable, biased, and original. In my experience, this is important work. So if a site engages in commentary about the work of doctors, using their names. Or if that same site publishes commentary (both pro and con) on an alternative treatment option, of which there is a whole spectrum ranging from credible to far out whacko, especially if this treatment is under the supervision of a certified health practitioner, then I wish them good luck and offer my thanks for daring to do this important work. Over the last 10 years, I've closely followed four patient support forums for difficult to treat illnesses and I know how imprecise and disorderly these discussions can become. However, I've also seen how decent and respectful they can be. I must say that I've never witnessed, nor have a read a story of, an example in which someone reading these forums applied bad advice and hurt themselves. The danger, here, is too often overstated. There are no lemmings lining up to run off the edge of a cliff. Instead, I've just seen a lot of desperate people for whom conventional medicine did not offer easy answers, and I've seen conventional medicine grudgingly begin to acknowledge the existence of these people and their conditions. This is medicine's frontier and we would be silly not to acknowledge its existence. The tension, here is for us to find a way to stay back in established territory, and yet, still point the way to the frontier. Like most things in life, this requires a proportional response. The question in front of us is this: How intolerant are we to be? Can we not simply recognize that Wikipedia is conservatively restrained, and then show others where to look for more information? I believe the answer should be that we end our articles at what we know to be verifiable and then, direct our readers to other web-sites for more detailed, original, and biased commentary. That's a line of demarcation I can live with. Danglingdiagnosis (talk) 06:34, 6 June 2009 (UTC)
Opposed The best way to get out information about which boards are valuable and which are not (a distinction we can't hope to make) can be done through other ways. In my experience, valuable resources are known to cancer clinicians, the best way to spread information on which boards are worthwhile to visit is to have users who benifit from the service tell other patients and their care providers. Second, the board discusses more than just MM, it also discusses MGUS (a very common condition) and alternative treatments in a fashion that wikipedia may not want to be promoting. Perhaps as a compromise there could be a link to a wikilist of MM resources, including authorative websites for further reading, and bullitin boards for discussions? Fuzbaby (talk) 02:00, 17 June 2009 (UTC)
- The above discussion is preserved as an archive. Please do not modify it. Subsequent comments should be made in a new section.
[edit] Renal Failure
The section on renal failure here makes no mention of cast nephropathy, but my reading suggests it's far and away the most common cause of renal impairment in people with multiple myeloma. There doesn't really seem to be much if any mention of myeloma cast nephropathy at all on wiki, perhaps could do with inclusion? I'm not able to do it right now, but unless others have objections, or if it's already residing here under a different name, I might try and add in a bit of info at a later date. McPat (talk) 13:37, 9 July 2009 (UTC)
- I've meant to spend some time on this article for a long time. Please include whatever you can find on cast nephropathy and other forms of myeloma kidney (there are several). JFW | T@lk 18:31, 9 July 2009 (UTC)
[edit] Lancet
doi:10.1016/S0140-6736(09)60221-X, 16 pages and 148 references. Might be useful. JFW | T@lk 00:43, 31 July 2009 (UTC)
[edit] Incurable
I disagree with the removal from list of incurable diseases, as MM is still incurable. There really aren't remissions according to our oncologists, more "supressions". My husband is told "you're in great health, except you have cancer." - but as I know this is not citable, can someone look into the removal? Survival time is increasing, but it's still an incurable disease. It never is completely gone. (Someday...I'll never stop hoping) Trista (Triste Tierra - cannot log in at work) 24.176.191.234 (talk) 18:01, 17 July 2010 (UTC)
- What list are you talking about? This article plainly says that it is considered incurable. Are you talking about some other page? WhatamIdoing (talk) 04:12, 18 July 2010 (UTC)
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- Sorry, I should have been more clear. Someone removed MM from the -category- of incurable diseases. About the same time some questionable information about survival began showing up. I'm a doof. Trista 24.176.191.234 (talk) 00:11, 21 July 2010 (UTC)
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- As far as I know, there's no such category. Category:Incurable diseases, at least, does not exist. WhatamIdoing (talk) 04:57, 21 July 2010 (UTC)
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[edit] Kidney disease
doi:10.1182/blood-2010-03-258608 is a brand new high profile review that looks into myeloma-related kidney disease. It could be a useful scaffold for the relevant content. JFW | T@lk 08:27, 6 September 2010 (UTC)
[edit] Sources for improvement
This article is in a fairly good state, but it needs some updating in view of the many recent studies, and we need to drop a few primary research articles. I have already added Raab as a recent high-quality source.
- 20462963 - the kidney paper mentioned above
- 19541364 - Raab
- 15031034 - Lancet review 2004 (Raab states that it is a good source for clinical data)
Depending a lot on how busy I will be the next few days, I will do some work here. JFW | T@lk 10:46, 6 September 2010 (UTC)
[edit] Research
Any objections to a short section on current research and experimental therapies in late stage clinical trials ? Maybe even a mention of Carfilzomib. Rod57 (talk) 13:02, 9 September 2010 (UTC)
- There are so many agents, some of which may still die in late stages. I find it much more useful to discuss the various pathways that are being targeted, e.g. proteasome inhibition (as in bortezomib). What kind of source were you hoping to use for such as section? JFW | T@lk 09:41, 12 September 2010 (UTC)
- I would not want to raise false hopes and discuss agents that are not at least in phase III. JFW | T@lk 23:08, 16 November 2010 (UTC)
Current Advances in Non–Proteasome Inhibitor–Based Approaches to the Treatment of Relapsed/Refractory Multiple Myeloma discusses mechanisms and some phase III trials eg of lenalidomide.
Current Advances in Novel Proteasome Inhibitor–Based Approaches to the Treatment of Relapsed/Refractory Multiple Myeloma implies none are yet in phase III. - Rod57 (talk) 10:00, 10 January 2012 (UTC)
[edit] cause and heritability
Could someone write about the cause and heritability of this disease? My father has had Kahlers disease for about 4-5 years now. He is the youngest (73) of 9 brothers and sisters of whom 3 others had/have the disease as well. I always understood that the disease is not hereditary but that they may have encountered similar circumstances, poisonous substance at the farm where they all lived, for example. But when you write about the genetic alteration it makes me wonder. What causes the alteration? Thanks for this article, it has helped me to update my knowledge of the disease and the treatments. K. De Wit, Netherlands 80.127.208.155 (talk) 10:47, 20 October 2010 (UTC)
- The genetic alterations in myeloma are usually acquired after birth rather than inherited. There is very limited data on environmental exposure as a cause for the disease. Online 'Mendelian Inheritance in Man' (OMIM) 254500 has some limited information about myeloma in family clusters. JFW | T@lk 19:06, 20 October 2010 (UTC)
[edit] "twice as common in blacks as in whites"?
The lead section claims that "The disease [...] is twice as common in blacks as it is in whites"[1].
For which definitions of "blacks" and "whites"?
--80.217.2.28 (talk) 14:52, 30 October 2011 (UTC)
- Of course it's about blacks and whites in the United States (as Google tells us), so I put that into the article.
- Is anything about this black–white difference stated in the source which is cited for the paragraph?
- And what are the specific definitions of "black" or "African American" and "white American" used in the source, if any? --80.217.2.28 (talk) 14:01, 2 November 2011 (UTC)
