synovial sarcoma on right lung

jay44
jay44 Member Posts: 2
edited March 2014 in Sarcoma #1
Hi folks. I have a synovial sarcoma tumor on my right lung. I have been through 6 sessions of 5-day treatments of chemo. The tumor did not shrink but did deaden out from the inside, but the overall size did not shrink. I go for surgery on April 26th to have at least part of my right lung removed (it is possible they will remove the whole right lung, not sure until he operates).

I came through chemo very well & have a good amount of strength right now. I hope that this will help after my surgery.

Has anyone else had or know someone else who has had this? I'm especially interested on how people do after lung removal.


Thanks,

Jay

Comments

  • elodie
    elodie Member Posts: 4
    #2
    I am myself a synovial
    I am myself a synovial saroma survivor and had already 3 lung surgeries but my lung tumors were rather small. I do know of 2 people who had a whole lobe removed. For one it was more than 5 years ago and he didn't have any recurrence since then. You can visit the sarcoma alliance bulletin board and he posted there under "rare sarcomas meet and greet". The other one had the surgery 2 and 1/5 years ago, still no recurrence but his recovery has been long and difficult. His mom Rose write posts on the myspace "Synovial Sarcoma Sucks" group:
    http://groups.myspace.com/index.cfm?fuseaction=groups.groupProfile&groupID=103034228&Mytoken=246185D7-E373-40FA-8F8AE6DF9DF8C42D2892734

    Here for the sarcoma alliance website:
    http://www.sarcomaalliance.com/Main.html

    Good luck!
    Elodie
  • nanonanu
    nanonanu Member Posts: 3
    #3
    elodie said:

    I am myself a synovial
    I am myself a synovial saroma survivor and had already 3 lung surgeries but my lung tumors were rather small. I do know of 2 people who had a whole lobe removed. For one it was more than 5 years ago and he didn't have any recurrence since then. You can visit the sarcoma alliance bulletin board and he posted there under "rare sarcomas meet and greet". The other one had the surgery 2 and 1/5 years ago, still no recurrence but his recovery has been long and difficult. His mom Rose write posts on the myspace "Synovial Sarcoma Sucks" group:
    http://groups.myspace.com/index.cfm?fuseaction=groups.groupProfile&groupID=103034228&Mytoken=246185D7-E373-40FA-8F8AE6DF9DF8C42D2892734

    Here for the sarcoma alliance website:
    http://www.sarcomaalliance.com/Main.html

    Good luck!
    Elodie

    lung removal and adaptation
    Hi Jay,

    My father-in-law survived 21 years after removal of his left lung for non small cell carcinoma. It was a wonderful 21 years and he played golf, water-skied, etc. When he finally recurred in his mid-70s, it was found that the remaining lung had tremendously expanded to fill up the same amount of space - adapatation had occurred!! We kick ourselved that the folks insisted on "waiting and watching" a spot on the MRI for 6 months without telling anyone, we missed the opportunity to reoperate by about month. Anyway, adapatation can occur in this case in someone in their mid-50s. I also wanted to echo that the the Sarcoma Alliance BBoard is a great discussion area -- see you there.
  • jay44
    jay44 Member Posts: 2
    #4
    elodie said:

    I am myself a synovial
    I am myself a synovial saroma survivor and had already 3 lung surgeries but my lung tumors were rather small. I do know of 2 people who had a whole lobe removed. For one it was more than 5 years ago and he didn't have any recurrence since then. You can visit the sarcoma alliance bulletin board and he posted there under "rare sarcomas meet and greet". The other one had the surgery 2 and 1/5 years ago, still no recurrence but his recovery has been long and difficult. His mom Rose write posts on the myspace "Synovial Sarcoma Sucks" group:
    http://groups.myspace.com/index.cfm?fuseaction=groups.groupProfile&groupID=103034228&Mytoken=246185D7-E373-40FA-8F8AE6DF9DF8C42D2892734

    Here for the sarcoma alliance website:
    http://www.sarcomaalliance.com/Main.html

    Good luck!
    Elodie

    thanks folks! I'll be
    thanks folks! I'll be posting there as soon as possible. It's the 23rd right now and I want to spend as much time with the family this weekend as possible.
  • naett
    naett Member Posts: 1
    #5
    synovial sarcoma right lung
    my husband had 2/3 of his right lung remooved he went to work 2 weeks after. he then did chemo for 3 months he is doing well. after 6 months it had reoccured, starts a different chemo on june 25. if anyone has any information on this type of cancer it would be greatly appreciated he is only 37 years old and the doctors tell me there isn't much information out there on how to treat this. it was a high grade stage 4

    just want some feedback from anybody dealing with this
    naett

    thank you
  • branchoffice
    branchoffice Member Posts: 2
    #6
    naett said:

    synovial sarcoma right lung
    my husband had 2/3 of his right lung remooved he went to work 2 weeks after. he then did chemo for 3 months he is doing well. after 6 months it had reoccured, starts a different chemo on june 25. if anyone has any information on this type of cancer it would be greatly appreciated he is only 37 years old and the doctors tell me there isn't much information out there on how to treat this. it was a high grade stage 4

    just want some feedback from anybody dealing with this
    naett

    thank you

    I have survived having my
    I have survived having my complete left lung removed, and six months intensive chemo. I feel great and it has been almost two years now. I do suffer a little shortness of breathe, but it is not a problem. I still go off shore fishing and enjoy all my prev. activities (have not tried scuba again, probably wont). Other than that I feel great. I am now 51 years old.
  • daozheng
    daozheng Member Posts: 1
    #7
    Please see my wife's
    Please see my wife's surviving story at youtube:
    http://www.youtube.com/watch?v=CliejpB_MiI
    Best wishes and good luck!
    DZ
  • obie1203
    obie1203 Member Posts: 8
    #8
    elodie said:

    I am myself a synovial
    I am myself a synovial saroma survivor and had already 3 lung surgeries but my lung tumors were rather small. I do know of 2 people who had a whole lobe removed. For one it was more than 5 years ago and he didn't have any recurrence since then. You can visit the sarcoma alliance bulletin board and he posted there under "rare sarcomas meet and greet". The other one had the surgery 2 and 1/5 years ago, still no recurrence but his recovery has been long and difficult. His mom Rose write posts on the myspace "Synovial Sarcoma Sucks" group:
    http://groups.myspace.com/index.cfm?fuseaction=groups.groupProfile&groupID=103034228&Mytoken=246185D7-E373-40FA-8F8AE6DF9DF8C42D2892734

    Here for the sarcoma alliance website:
    http://www.sarcomaalliance.com/Main.html

    Good luck!
    Elodie

    r. lung synovial


    Hi, my 17 year old son was just diagnosed with primary synovial sarcoma in his r. lung. It was less than 1 cm and they feel they got it all out with negative margins. However, they want to scan him every 3 months for the first year. I have found that this is very rare since it is primary in the lung and not secondary (not much info out there). I will be resarching holilstic alternatives for him as well. Was yours primary or secondary?
    I did not know about the website for the sarcoma alliance. thanks. I hope this finds you in good health and any info you have that might be helpful to us would be greatly appreciated.
  • obie1203
    obie1203 Member Posts: 8
    #9
    naett said:

    synovial sarcoma right lung
    my husband had 2/3 of his right lung remooved he went to work 2 weeks after. he then did chemo for 3 months he is doing well. after 6 months it had reoccured, starts a different chemo on june 25. if anyone has any information on this type of cancer it would be greatly appreciated he is only 37 years old and the doctors tell me there isn't much information out there on how to treat this. it was a high grade stage 4

    just want some feedback from anybody dealing with this
    naett

    thank you

    my son with synovial sarcoma


    Hi, I hope your husband is doing well. My 17 year old son was just diagnosed with s.s. of his right lung. it is the primary spot and i was wondering if your husband's was primary or secondary? there is not much info out there on primary s. sarcoma of the lung and I am desperate to find out as much about it and all the options I have for my son (whether alternative or otherwise). thanks much
  • ksfolmar
    ksfolmar Member Posts: 6
    #10
    Jay,
    I have synovial sarcoma
    Jay,
    I have synovial sarcoma in my right lung-primary. I had one tumor removed a year ago with the lower lobe, a piece of my heart and several lymph nodes. I am now recovering from my second surgery from April 1st to remove another tumor from the the right mid-lobe. I had 7 cycles of adriamycin and ifex on a three week rotation. I kept this up until surgery was possible without removing another whole lobe. This surgery went well. I had a wedge resection and the entire pleura removed. Breathing is not difficult and my weakness will get better. I am starting proton radiation therapy at MD Anderson at the beginning of May. This will target the margins from the last tumor and hopefully keep the tumor from coming back! Good luck! Look into proton therapy, it's very interesting! Kim
  • ksfolmar
    ksfolmar Member Posts: 6
    #11
    obie1203 said:

    r. lung synovial


    Hi, my 17 year old son was just diagnosed with primary synovial sarcoma in his r. lung. It was less than 1 cm and they feel they got it all out with negative margins. However, they want to scan him every 3 months for the first year. I have found that this is very rare since it is primary in the lung and not secondary (not much info out there). I will be resarching holilstic alternatives for him as well. Was yours primary or secondary?
    I did not know about the website for the sarcoma alliance. thanks. I hope this finds you in good health and any info you have that might be helpful to us would be greatly appreciated.

    Obie,
    I have synovial
    Obie,
    I have synovial sarcoma primary to my right lung. The first tumor was found a year ago and was removed with the lower right lobe. I did not make it to my six month scan before another tumor was found in my right mid-lobe. Started chemo- adriamycin and ifex and did this for four days every three weeks for five months. The tumor got small enought that I could have surgery without removing the whole lobe. I had surgery April 1st to remove the tumor and lung pleura. I will be going to MD Anderson for proton therapy at the first of May. They will use the proton beam on the tumor margins to kill the cancer cells. I highly recommend you look into proton therapy. Traditional radiation damages good lung tissue, where as proton therapy is targeted. Good luck with everything! If you have any questions, just ask! Kim
  • jamonee
    jamonee Member Posts: 1
    #12
    obie1203 said:

    r. lung synovial


    Hi, my 17 year old son was just diagnosed with primary synovial sarcoma in his r. lung. It was less than 1 cm and they feel they got it all out with negative margins. However, they want to scan him every 3 months for the first year. I have found that this is very rare since it is primary in the lung and not secondary (not much info out there). I will be resarching holilstic alternatives for him as well. Was yours primary or secondary?
    I did not know about the website for the sarcoma alliance. thanks. I hope this finds you in good health and any info you have that might be helpful to us would be greatly appreciated.

    In response to synovial r lung
    Hi,

    I saw your post twice now. I thought I could help you in some way. My husband did have his right lung removed, then radiation. He had a clean bill of health for 2months then it was back, but now in his liver and abdoman. He went for a clinical trial drug in Charleston SC. It seemed to shrink the tumor in half after a week and an half, but took a toll on his body. He had two treatments. He his now passed. He passsed away in Nov 2010. I would love to help if you have anymore questions. HIs mother had sarcoma of the breast and is a 5 yr out clean bill of health.

    MD Anderson is a place also to take your son. Please repond

    Thanks

    Bettina

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