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Interesting story http://www.dotmed.com/news/story/10456
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MPNST research
- By CindyLouWho
- Posted October 12, 2009 at 9:26 pm · 6 replies
- In News, research and advocacy
- Shared with the public
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- By azur
- Posted October 13, 2009 at 7:28 am
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Thanks a lot Cindy for this article , we must follow ...
- By CindyLouWho
- Posted October 13, 2009 at 8:08 am
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FY1 While they use the term "neurofibroma" they don't mean dermal neurofibromas, they are referring to the plexiform type. These are really the ones with the cancer/sarcoma/MPNST risk.
Cindy
- By wildflower
- Posted October 13, 2009 at 10:41 am
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Thanks, Cindy. That's very important and useful information.
- By rileyp
- Posted October 14, 2009 at 12:03 pm
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Hi Cindy,
Thank you for your research info. My husband was recently diagnosed the MPNST in the sciatic nerve, and we have consulted several cancer specialists and their recommendations is so different, that it's so difficult to make a decision. (still deciding on treatment options) not many available.
If you know of any case where the treatment was successful, I would appreciate if you could post it.
Thank you for being an avid researcher.
- By CindyLouWho
- Posted October 14, 2009 at 9:05 pm
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rileyp, I am very sorry to hear of your husband's diagnosis. As you say there are not a lot of treatments available for MPNST. I was just talking to a dad on the other BB yesterday whose young son had MPNST. As is often the case they were unable to get clear margins during surgery. They did chemo and radiation and he has had three clear scans over the past year. I will see if I can find out what chemo protocal they tried.
Also, I am sure you are probably already aware but there is a clinical trial for stage 3/4 MPNST.
http://bethesdatrials.cancer.gov/clinical-research/search_detail.aspx?Proto colID=NCI-06-C-0043
I met a brilliant young lady through the BBs who is very well informed on this subject. I have always remembered one important thing that she told me.... when dealing with MPNST it is crucial to be seen at one of the Sarcoma Centers. Have you tried getting that type of specialized advise? There are sarcoma forums similar to this one and I am sure MPNST must come up there once in a while, perhaps they would be able to give you some insight.
http://www.sarcomaalliance.com/bulletinboard.html
Cindy
- By rileyp
- Posted October 15, 2009 at 1:24 pm
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Thanks Cindy so much for your help. He is being treated at a sarcoma center in NY, but we have so many different opinions as to what treatment to do, that is very difficult to decide, which is the better treatment for this type of cancer because it is so rare. Thanks
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