Synovial Sarcoma--Starting Gleevec

dianec2004
dianec2004 Member Posts: 1
edited March 2014 in Sarcoma #1
My husband was diagnosed with synovial sarcoma in Aug. 2003. He is 37 years old, and the primary tumor was in his thigh, but it had already metastasized to both lungs. He has endured 4 different chemo regimines for the metastases with no success (all the standards . . .adriamycin, ifosfamide, gemzar, etc. too many to list).

He starts taking Gleevec this Friday as part of a clinical trial at Sloan Kettering. Has anyone else tried this or heard if there are any results yet for Gleevec & non-GIST sarcomas? Any info. would be appreciated.

Comments

  • shancock
    shancock Member Posts: 1
    #2
    Hi did you get a response to this? My boyfriend is just about to finish his first 6 cycles of Dox and Ifos, all ok so far but just trying to keep up to date. How is it going for you two?
  • Sheri1983
    Sheri1983 Member Posts: 1
    #3
    I have just been diagnosed with Synovial Sarcoma Stage 4. The prognosis is not good. I will be starting chemotherapy, and will be having 6 rounds to begin with as an inpatient. I live in Australia, im 23 years old and am scared as all hell. If i go into remission, thats great but i have to stay in remission otherwise ill die. most cases of synovial sarcoma pass away within 12-24 months. Does anyone have any information regarding synovial sarcoma? If so, could you please email me.
  • Angela67
    Angela67 Member Posts: 2
    #4
    Sheri1983 said:

    I have just been diagnosed with Synovial Sarcoma Stage 4. The prognosis is not good. I will be starting chemotherapy, and will be having 6 rounds to begin with as an inpatient. I live in Australia, im 23 years old and am scared as all hell. If i go into remission, thats great but i have to stay in remission otherwise ill die. most cases of synovial sarcoma pass away within 12-24 months. Does anyone have any information regarding synovial sarcoma? If so, could you please email me.

    I am 39 and I also have a synovial sarcoma in my right foot. My pain started when I hit 30. I had the first tumor removed in Dec.2002 when I was 34. I now have another tumor growing in the same spot, that has not spread(thank God). My tumor is a slow growing tumor. I have owned and operated a Lawn service up till 3 years ago. Sometimes I wonder if I didn't get this from herbisides,for I have been doing this for 20 years.It is a very scary thing to have to deal with. I haven't had treatment as of yet. I am considering amputation. I wish you the best in your decision making. It is very tough to have to deal with especially at such a young age. Just remember that God LOVES you and he will be right there holding your hand through it all!!
  • Szabo
    Szabo Member Posts: 1
    #5
    Sheri1983 said:

    I have just been diagnosed with Synovial Sarcoma Stage 4. The prognosis is not good. I will be starting chemotherapy, and will be having 6 rounds to begin with as an inpatient. I live in Australia, im 23 years old and am scared as all hell. If i go into remission, thats great but i have to stay in remission otherwise ill die. most cases of synovial sarcoma pass away within 12-24 months. Does anyone have any information regarding synovial sarcoma? If so, could you please email me.

    hi I am 25 old and got synovial cancer when I was 19 it started as a lumb on my right leg fortunetly i had to go throgh an amputation so I lost my right leg above my knee...well had loads of chemo..then after 2 yaers the cancer got back on my lung in power then were 2 lumps in my lung lucky me they were close to eachother so the choped them of and started again chemo no idea how many just had for a cuppel allergie...well it passed almouse 3 yaers since then and now I am waiting for the CT results hope they will be fine...my advise is something can be removed what is attaced from this type of cancer soft tisse synovila sarcome remove it as soon as posible....
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • ssa
    ssa Member Posts: 1
    edited January 2017 #7
    Angela67 said:

    I am 39 and I also have a synovial sarcoma in my right foot. My pain started when I hit 30. I had the first tumor removed in Dec.2002 when I was 34. I now have another tumor growing in the same spot, that has not spread(thank God). My tumor is a slow growing tumor. I have owned and operated a Lawn service up till 3 years ago. Sometimes I wonder if I didn't get this from herbisides,for I have been doing this for 20 years.It is a very scary thing to have to deal with. I haven't had treatment as of yet. I am considering amputation. I wish you the best in your decision making. It is very tough to have to deal with especially at such a young age. Just remember that God LOVES you and he will be right there holding your hand through it all!!

    Synovial Sarcoma

    I had similar case like yours, at the end of 2015 i was found with a Synovial sarcom in my left lung and it was removed  in April 2016 after 4 round of chemo Ifex+Dox+Mesna,  chemo was 10% effective, after 6 month of surgery, my CT can showed plurral thickening and tumor of 20mm dia in diaphram n pericardium, and my oncologists suggested me to have 2 month on Votrient, pls  share me any other treatment that you see as successful

  • Drindra
    Drindra Member Posts: 3
    #8
    ssa said:

    Synovial Sarcoma

    I had similar case like yours, at the end of 2015 i was found with a Synovial sarcom in my left lung and it was removed  in April 2016 after 4 round of chemo Ifex+Dox+Mesna,  chemo was 10% effective, after 6 month of surgery, my CT can showed plurral thickening and tumor of 20mm dia in diaphram n pericardium, and my oncologists suggested me to have 2 month on Votrient, pls  share me any other treatment that you see as successful

    About synovial sarcoma

    Is this inherited to next generation?

  • Esg
    Esg Member Posts: 1
    edited May 2021 #9
    Synovial Sarcoma at 73

    i am a 73 year old female with no cancer in my family for generations and have Synovial Sarcoma in my left calf , had 2 surgeries to remove it and am now 3/4 way through radiation treatments. Just developed an infection in the surgical scar area. Have been prescribed an antibiotic for 10 days. Am wondering if this is typical or rare? What is the current success rate of radiation treatments.

     

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