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Myxoid Fibrosarcoma: Information? Clinical trials?

 
 
Noddy24
 
Reply Thu 28 Apr, 2005 01:35 pm
This month a young friend of an old friend was diagnosed with Myxoid Fibrosarcoma. He's twenty-seven years old.

For two years he ignored a lump in his buttocks. When the lump was finally removed and biopsied the diagnosis was Myxoid Fibrosarcoma. The Oncologist is a hasty, abrupt sort of man and told the patient than neither radiation therapy nor chemotherapy were indicated; that the cancer was likely in his system and would keep surfacing, probably in the lungs.

He's getting a second opinion next week. He's a pleasant young man, but very unsophisticated medically.

Can anyone point me toward some sites with simple information. I'd like to know why conventional therapies are contradicted and whether there are any clinical trials being conducted.

Twenty-seven is very young to be facing a death sentence.
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dragon49
 
  1  
Reply Thu 28 Apr, 2005 02:44 pm
http://www.thehealthresource.com/cancer_info/softissue_sarcoma.html

had good description of sarcomas in general (fibrosarcoma being a tumor of the fibrous tissue)

i would also try the american cancer society (www.cancer.org) they probably have the most up to date info on clinical trials. you might have to call them. Did the oncologist tell your friend this was a terminal cancer? It looks like if they removed the tumor that is the best they can do until it metastasizes some where else. however, it doesn't sound similar to an aggressive form similar to pancreatic cancer where you get 6 months max.

Sorry for you friend, finding out you have cancer can't be easy.
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Phoenix32890
 
  1  
Reply Thu 28 Apr, 2005 02:53 pm
Noddy- I found plenty with involved information, but not too much simple stuff.

This may help:

http://www.curesarcoma.org/

Tell the young man to click the patient information link. There is also a link to clinical trials.

One thing about cancer. A person with the disease needs to be treated by someone who is realistic, but optimistic. I am glad that he is getting a second opinion. Did the doctor "stage" his disease? If not, the young man has to go to someone who will.

Where does he live? I could probably find some names of excellent doctors who specializes in his illness. He really needs a specialist that sees his type of cancer all the time.

In the meantime, he needs to learn all that he can about the illness.

The American Cancer Society has a wonderful educational program, called "I Can Cope". Tell him to check it out.

http://www.cancer.org/docroot/ESN/content/ESN_3_1X_I_Can_Cope.asp?sitearea=ESN

Remember, if my doctor had been right, I would have been dead 11 years ago!
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Phoenix32890
 
  1  
Reply Thu 28 Apr, 2005 03:16 pm
Found some more:

Quote:
The following is a list of some of the medical centers and hospitals specializing in sarcoma. While the list is not comprehensive, it includes the leaders in sarcoma research and treatment. Because sarcomas are rare it is important to find physicians who have experience with this disease. We hope the following list makes finding a specialist easier to accomplish.


http://www.sarcomaalliance.com/master.html?SubCategoryId=2

http://www.nlm.nih.gov/medlineplus/softtissuesarcoma.html
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Noddy24
 
  1  
Reply Fri 29 Apr, 2005 12:17 pm
dragon49--

The young man has little general information about cancer and he and his sister lacked the background to ask questions. Thank you.

Phoenix--

I told my friend that you'd come through. The young man lives in Queens and thanks to your link has an appointment with an oncologist at Sloan Kettering in three weeks.

Many thanks.

Hold your dominion.
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Phoenix32890
 
  1  
Reply Fri 29 Apr, 2005 01:04 pm
Oh Noddy, I am so glad. It is very important for him to get to the right person.

If he is in Queens, there are probably plenty of "I Can Cope" courses around. There is a place on the American Cancer Society website where he can type in his zip code to determine what cycle of the program is starting. If he lives in the New York City area he certainly should have no problem.

I had joined one of the "I Can Cope" group with my husband when I was first diagnosed. The focus was mainly informational and support. Through the group I learned of a therapist who specialized in working with people with life threatening illness. I joined that group, which was more therapeutically oriented, and found it invaluable.

One of the important things about dealing with cancer, is the ability to get a handle on, and some control, over your own life. There is something about cancer that is very emotionally draining...................the idea that your body is working to destroy you. Feeling helpless is debilitating in an of itself, and any little bit of control is to the good.

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dragon49
 
  1  
Reply Fri 29 Apr, 2005 02:39 pm
i am definitely glad to hear that he is getting good help. Good luck to him. I know how difficult it can be, i have a grandmother that survived breast cancer and a great aunt who succumbed to it after is metastasized on her lungs. Best of luck, i will think good thought for you and your friend.
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ossobuco
 
  1  
Reply Fri 29 Apr, 2005 02:43 pm
Good work, Phoenix, and welcome to a2k, Dragon49!
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dragon49
 
  1  
Reply Fri 29 Apr, 2005 02:48 pm
thank you, i stumbled on to this while looking for some info and i think it's great!! everyone is so helpful and funny as all get out at the same time!
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