Need Dr. With Experience With Leiomyosarcoma Of The Pancreas

Hello there. My mother was just diagnosed with leiomyosarcoma of the pancreas. The Dr. that she has now says that they are going to treat her with just injections of docetaxel and gemcitabine. This doesn't seem right since all of the research that I have done so far suggest that the removal or partial removal of the pancreas or a Whipple procedure is required. So I am looking for a center or a doctor that has experience with leiomyosarcoma of the pancreas. Does anyone know where the best center/dr. in the country is located?

Dear rmd1105,

Sorry to hear about your mother.  Suggest you call PanCan, an organization that knows almost everything about  pc.  They will refer you to surgeons and provide you with info as well as a pal for your mother to speak with on the phone.  They will match her with someone whose history is similar to hers and will provide support via the phone.  Many people believe M D Anderson in Texas is the best place for treating PC; others prefer Johns Hopkins with their 1 day clinic or Dr. Fine at Columbia Presbyterian in New York City.  I think PanCan will know all about these and more; they are located in California, phone 1 877 272 6226.  Johns Hopkins also has a support board where there are lots of both caregivers and survivors with huge amounts of knowledge and compassion.  Someone there may know about the particular tumor your mother has; the board also has a feature where you can type in a subject and do a search which will bring up past messages about the subject.  You can Google them since I don't know their exact web address.  I hope you find some of this info helpful as you begin your journey down this difficult road.

 Best wishes to you and your mother.

Joan  

 

On 5/16/2008 Joan l wrote:

Dear rmd1105,

Sorry to hear about your mother.  Suggest you call PanCan, an organization that knows almost everything about  pc.  They will refer you to surgeons and provide you with info as well as a pal for your mother to speak with on the phone.  They will match her with someone whose history is similar to hers and will provide support via the phone.  Many people believe M D Anderson in Texas is the best place for treating PC; others prefer Johns Hopkins with their 1 day clinic or Dr. Fine at Columbia Presbyterian in New York City.  I think PanCan will know all about these and more; they are located in California, phone 1 877 272 6226.  Johns Hopkins also has a support board where there are lots of both caregivers and survivors with huge amounts of knowledge and compassion.  Someone there may know about the particular tumor your mother has; the board also has a feature where you can type in a subject and do a search which will bring up past messages about the subject.  You can Google them since I don't know their exact web address.  I hope you find some of this info helpful as you begin your journey down this difficult road.

 Best wishes to you and your mother.

Joan  

She has leiomyosarcoma (LMS).... NOT pancreatic cancer.   LMS is a rare sarcoma of the smooth muscles. It can start with any involunteery muscles... in this case it started the the pancreas organ.   LMS is treated very differently than most other cancers.

 

Welcome to the world of Leiomyosarcoma.... we're glad you found us but sorry that needed to.

Our mantra is always..."Get to a MAJOR SARCOMA CENTER."

..."Get to a MAJOR SARCOMA CENTER."

..."Get to a MAJOR SARCOMA CENTER."

For a list see http://www.LMSdr.org  look under PATIENT RESOURCES.

LMS only occurs in about 4 people in a million.  Most oncologist screw up on how to best treat it.  It is  very aggressive sarcoma.... so don't mess around using the wrong chemos or treatments.

 L,

Sharon, 7 yr. LMS survivor