Attention all Sarcoma Patients!

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Attention all Sarcoma Patients!

by jstsandy on Fri Aug 01, 2008 12:00 AM

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Hello!

I am trying to reach all sarcoma patients.  We are getting a group together to perhaps get some statistics going for those of us LIVING with this cancer.

I have fibrosarcoma (I lost my ass to cancer...lol)  Our cancer is very rare, but the good news....is I found four other people with sarcoma this past weekend at the LiveStrong summit in Ohio (Lance Armstrong's foundation).  We got together every night and had dinner and we are getting our case studies researched by The James Sarcoma Center in Ohio!  We are getting together a data base of sarcoma patients. Would you like to be in touch with us by email?

 Call me!  There aren't many of us!

 So far we have:  Fibrosarcoma, Clear Cell Sarcoma, Osteosarcoma, GIST, Pleomorphic Sarcoma...we would like to include ALL OF YOU!

Your sister in Sarcoma!

Sandy

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RE: Attention all Sarcoma Patients!

by Jerry1 on Thu Aug 28, 2008 12:00 AM

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On 8/1/2008 jstsandy wrote:

Hello!

I am trying to reach all sarcoma patients.  We are getting a group together to perhaps get some statistics going for those of us LIVING with this cancer.

I have fibrosarcoma (I lost my ass to cancer...lol)  Our cancer is very rare, but the good news....is I found four other people with sarcoma this past weekend at the LiveStrong summit in Ohio (Lance Armstrong's foundation).  We got together every night and had dinner and we are getting our case studies researched by The James Sarcoma Center in Ohio!  We are getting together a data base of sarcoma patients. Would you like to be in touch with us by email?

 Call me!  There aren't many of us!

 So far we have:  Fibrosarcoma, Clear Cell Sarcoma, Osteosarcoma, GIST, Pleomorphic Sarcoma...we would like to include ALL OF YOU!

Your sister in Sarcoma!

Sandy

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 (leave a message, I will call you RIGHT BACK)


Hello,

I am interested in joining your group. I also am slowly losing my ass to a sarcoma. I have had three surgeries and they tell me there is nothing more they can do if it comes back. I have soft tissue sarcoma. Let me know what I need to do to join your group. Thanks

Jerry

My husband has soft tissue sarcoma

by jeanb40 on Fri Sep 19, 2008 12:00 AM

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On 8/1/2008 jstsandy wrote:

Hello!

I am trying to reach all sarcoma patients.  We are getting a group together to perhaps get some statistics going for those of us LIVING with this cancer.

I have fibrosarcoma (I lost my ass to cancer...lol)  Our cancer is very rare, but the good news....is I found four other people with sarcoma this past weekend at the LiveStrong summit in Ohio (Lance Armstrong's foundation).  We got together every night and had dinner and we are getting our case studies researched by The James Sarcoma Center in Ohio!  We are getting together a data base of sarcoma patients. Would you like to be in touch with us by email?

 Call me!  There aren't many of us!

 So far we have:  Fibrosarcoma, Clear Cell Sarcoma, Osteosarcoma, GIST, Pleomorphic Sarcoma...we would like to include ALL OF YOU!

Your sister in Sarcoma!

Sandy

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 (leave a message, I will call you RIGHT BACK)

We found out he had this sarcoma in May of this yr and they said 3 to 6 mos.  We have taken 4 chemo treatments and the results were not good, it barely slowed it down, so he decided to stop the treatments and go for quality of life rather than being sick all the time.  We have been married 49 yrs and I am having a hard time as the time goes by.  His cancer is spreading at an alarming rate. This is a crazy cancer b/c he does not look sick and I guess I keep thinking maybe its a mistake????? Does that sound like denial?  Well I'm sure I will have time later to accept. I guess I need to vent.....so maybe someone can talk to me. 

 


 

RE: Attention all Sarcoma Patients!

by Chris54 on Thu Sep 25, 2008 12:00 AM

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On 8/1/2008 jstsandy wrote:

Hello!

I am trying to reach all sarcoma patients.  We are getting a group together to perhaps get some statistics going for those of us LIVING with this cancer.

I have fibrosarcoma (I lost my ass to cancer...lol)  Our cancer is very rare, but the good news....is I found four other people with sarcoma this past weekend at the LiveStrong summit in Ohio (Lance Armstrong's foundation).  We got together every night and had dinner and we are getting our case studies researched by The James Sarcoma Center in Ohio!  We are getting together a data base of sarcoma patients. Would you like to be in touch with us by email?

 Call me!  There aren't many of us!

 So far we have:  Fibrosarcoma, Clear Cell Sarcoma, Osteosarcoma, GIST, Pleomorphic Sarcoma...we would like to include ALL OF YOU!

Your sister in Sarcoma!

Sandy

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- " target="_blank" rel="nofollow">http://www.cancercompass.com/common/guidelines.html--

 (leave a message, I will call you RIGHT BACK)


I am a sarcoma survivor for two years..

I had MFH pleomorphic sarcoma.  I had a tumor in my upper thigh...received 25 rounds of radiation and then surgical removal of the tumor and some of the surrounding muscle.  I am doing great and am thankful. Up until now I had been going to the doctor every 3 months for a chest x-ray..I have graduated to every 6 months now.. I would love to be contacted by you

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RE: Attention all Sarcoma Patients!

by helpmyhubby on Thu Oct 16, 2008 12:00 AM

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My husband has retroperitoneal sarcoma. Is this group for the caregivers too?

RE: Attention all Sarcoma Patients!

by jackrch on Thu Oct 16, 2008 12:00 AM

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Hi-Well, my husband just lost his bladder and prostate to a Leiomyo Sarcoma, we live in Boston and he just got out of the hospital and I'm hoping the reports (pathology) will be good when we see the surgeon next Tuesday, he has a new bladder a/k/a neobladder and it has been a long journey but we are hoping for "CANCER FREE".  We have been hit by the truck and we are hopeful that our life will continue and we can live our life as we knew it.  Thanks for letting me vent.  Jackie

RE: Attention all Sarcoma Patients!

by vinnieb on Fri Oct 24, 2008 12:00 AM

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YES I am 31 yrs old and have been badling leimiosarcoma for 2 years.I have been terminal for about a year  i have alot of tumors chemo has not helped for me at all.They now want to completly amputate my right leg because that is were it started.But they do not no if it will pro long my life foresure because i have so many other tumors any info would help.

RE: Attention all Sarcoma Patients!

by vinnieb on Sat Oct 25, 2008 12:00 AM

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Hey just hang in there

RE: My husband has soft tissue sarcoma

by vinnieb on Sat Oct 25, 2008 12:00 AM

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I also have sarcoma and have been batling for 2 yrs.1 year ago i was givin 6 to 8 weeks to live.I am still here chemo has not worked in the past for me either.I am on anew one now to see if it will slow it down.MOST PEOPLE tell me i dont look sick but it is an enternal battle every day with pain and sicckness.Keep your heads up and stay positive and realize there are other options if chemo is not working.

RE: My husband has soft tissue sarcoma

by auntgladys on Sat Nov 08, 2008 12:00 AM

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God bless, it is so good to hear that you are keeping positive.  Keep up the good thoughts and keep moving forward, that is our mantra!!  My husband has been battling sarcoma for 3 years off and on.  It came back in a big way this year but we feel good for catching it early.  He also looks "fine" to other people so they have no idea what he's gong through.  We are doing scans at the end of the month to see how this new chemo treatment is doing. 
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