Talk:Myelodysplastic syndrome
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[edit] Malignant or not?
Is MDS considered a malignant (cancerous) disease or not? --Spiff666 (talk) 15:24, 3 June 2008 (UTC)
[edit] Could
Could be wrong here, but isn't there a possiblility of a complete recovery in the rare cases where a patient is young enough to have a bone marrow transplant and it goes well? If so, this paragraph
The best prognosis is seen with refractory anemia with ringed sideroblasts and refractory anemia, here some patients live more than a decade (the average is on the order of 3-5 years); the worst outlook is with RAEB-T, where the mean life expectancy is less than 1 year. About 1/4 of patients develop overt leukemia. The others die of complications of low blood count or unrelated disease.
should definitely mention it. CTOAGN 15:09, 5 October 2005 (UTC)
- I am not up-to-date with the rate of CR in transplant recipients for MDS. The fact that they are transplanted when young suggests that CR with long-term remissions are feasible. If I come accross the relevant stats I will update the page. JFW | T@lk 06:34, 6 October 2005 (UTC)
Thanks for replying. I don't want to edit the article myself (I'm not a medic and don't like the idea of non-medics editing these articles) but would like it to be mentioned. I found Wikipedia by googling for MDS after being diagnosed with it at 29, and reading the above was something of an experience. Fortunately I already knew that the vast majority of MDS patients were elderly and many of them had it as a secondary illness, and assumed that was one of the reasons for the short life expectancy, but someone who didn't know that would have found it very upsetting. CTOAGN 18:43, 6 October 2005 (UTC)
- Perhaps Andrew73 may be able to help. He's more into haematology than I am at the moment. JFW | T@lk 23:22, 13 October 2005 (UTC)
- I expanded the therapy section a little bid. Treatment with BMT can be curative, but I agree that when you read the description of MDS, it can be disheartening. What complicates things is that it is heterogeneous condition, so it can be hard to give specifics about prognosis. Andrew73 01:30, 17 October 2005 (UTC)
Is it necessary also to include the 5q- syndrome and unclassifible into the classification? --Calvinchong 03:47, 9 December 2005 (UTC)
- Although I cannot source this, my little brother recently had a bone marrow trnspnt and though hes not completely over it it is denfintly possible to have a very near complete recovery in the cases where a patient is young and lucky enough to have a sucessful transplant. Elkrobber (talk) 00:56, 22 March 2008 (UTC)
[edit] Prognosis
I really appreciate the effort that's gone into the article, but I've got a couple more suggestions: The article still reads a bit along the lines of "if you've got myelodysplasia, it's going to kill you". The possibility of long term remission isn't mentioned until quite late in the article, after such sentences as "The others die of complications of low blood count or unrelated disease" (I assume this sentence refers to RAEB-T but that's not completely obvious and I read it as referring to MDS in general when I first read the article). I've taken the liberty of editing the intro, and I'd really appreciate it if someone who knows what they're talking about could refine what I've written.
- I've edited the intro and toned down the intro's bleak tone as wlel as the section about patients running into difficulties with bleeding or infection. The prognosis and the possibility for long term remission is best determined by the IPSS score (cytogenetics, number of neutropenias), so I figured it was best to mention the prognosis during that section, rather than upfront in the article. Andrew73 02:38, 29 December 2005 (UTC)
-
- Having read it again, I have to disagree. To someone recently diagnosed with this illness, that reads as "You have no more than ten years to live." Fair enough if it were true, but if there's any possiblity at all of someone living longer it needs to mentioned as soon as life expectancy is mentioned. A patient would be quite likely to stop reading there, and miss the bit about transplants further down. After my experience of reading this article immediately after diagnosis I think it's vital to mention it early on - if you haven't discussed life expectancy with a doctor you don't want to read that things are even worse than they really are. CTOAGN (talk) 19:43, 14 April 2006 (UTC)
Also, the second Diagnosis section is somewhat incomprehensible to a non-medic. I realise it's probably difficult to avoid jargon to some extent with a subject like this, but phrases such as "Erythroid nuclear budding" don't explain the condition to me at all. Do you think it would be possible to explain what's being referred to in a more accessible way?
Thanks, Image:Yemen flag large.png CTOAGN (talk) 04:15, 28 December 2005 (UTC)
[edit] myelodysplastic syndrome
My mother has just been diagnosed with myelodysplastic syndrome. I have researched the condition, but can not find any mention of predisposition for the condition for offspring. I understand that a child may never develop this same syndrome, but is there any indication that heredity plays a part in its evolution into the next generation. The medical personnel in charge of my mother's care have not been able to answer my question. —The preceding unsigned comment was added by 70.250.75.162 (talk) 17:01, 23 December 2006 (UTC).
- My mother also has MDS. She was informed by her specialist that MDS is "thought" to be triggered, in some cases, by early chemical or radiation exposure. Antony mariani 06:00, 25 March 2007 (UTC)
- I seem to remember talking to a researcher that thought MDS predisposition could be passed on although there has not been any proof of that so far. If anyone is interested I have a page regarding MDS and N-acetylcysteine at http://www.seandennis.com/nac4mds . MDS took my father in 2003. Sean Dennis
I have an aunt and an uncle that have passed away within the past year from this disease. To say it is not genetic or not a strong likelihood of being genetic is incorrect. After reviewing their symptoms, it is also believed that my grandmother and her sister died of this disease. To the best of my knowledge, none of them were exposed to any environmental issues. My physician specializes in blood disorders and when I went to him with my concerns he told me that the only sure way to tell if you have it is by bone marrow testing. However, even if I had the disease, there was nothing I could do until the symptoms started to show. I had hoped that maybe storing bone marrow now, when I'm younger, could help me later when/if the disease flared up. But at this time there's nothing to be done. My hope is that research continues and that in time the odds will be better; not only for myself but for my entire family. —Preceding unsigned comment added by 204.250.6.30 (talk) 15:00, 8 October 2007 (UTC)
[edit] Originator of the Compound
The compound leading to the development of Vidaza was first discovered by Dr. Ladislav R. Haňka, a Czech immigrant who at the time worked for Upjohn. He discovered the compound while searching for cancer agents amongst yeasts and molds, and he strongly felt that it held great promise in the treatment of cancer. However, his superiors prevented him from investigating the compound, feeling it would take to too much effort to purify it and that the sales of the drug would be too few; they said it didn't make business sense. Dr. Haňka vehemently fought the decision but ultimately could not convince the leaders at Upjohn, so the compound was put on the shelf and Dr. Haňka went on to develop many other novel compounds, being awarded several patents in the process.
Later, after Dr. Haňka had retired, Upjohn was merged with Pharmacia AB and later integrated into Pfizer, and in the process many of the compounds were also sold. Dr. Haňka's compound in particular went to Pharmion who found great promise in it and developed it into Vidaza. When the drug had passed phase III trials and they were announcing it, they invited Dr. Haňka back to speak at the announcement. At the event he had the opportunity to meet with a great many people who had been helped by the drug, which moved him deeply. Upon speaking to the group, with tears in his eyes, he held the tiny box of Vidaza aloft and said "This... this... is my life's work." And indeed it was.
Dr. Haňka currently resides in Kalamazoo, Michigan, with his wife, Eva Neugebauerová Haňka.
Epilogue: With his vast experience in yeasts and Czech brewing, in his retirement Dr. Haňka helped found the Kalamazoo Brewing Company which is now known as Bell's Brewery in Kalamazoo and Comstock Michigan. He developed many of the initial brewing yeasts for the brewery, leading to the many of the well known and award-winning beers that have been produced by Bell's over the years. Dr. Haňka remains one of the major investors in the privately held brewery to this day.
I know all this because Dr. Haňka is my father-in-law.
-Kevin B. McLemore
Puff4 16:40, 2 August 2007 (UTC)
- Very nice story, Kevin. I have been interested in the Vidaza story since meeting Pharmion's CEO. What a great idea, rescuing drugs like this from the dustbin, and getting them FDA approved. They didn't have to conduct a new trial for the FDA licensing--they only reanalyzed an old study!--Dr.michael.benjamin 05:18, 31 October 2007 (UTC)
[edit] Dad died
My dad died because of this. —Preceding unsigned comment added by 76.68.153.14 (talk) 00:15, 31 May 2008 (UTC)
