soft tissue sarcoma

bigt
bigt Member Posts: 3
edited March 2014 in Sarcoma #1
just got my dx. dont know what type only that it is low grade and large in my right leg behind the knee .they want me in surgey right away and then raditaion.would like to here from anyone with any info on this treatment. how long was there recovery what was rad. like can you still play basketball is there a lot of pain .they told me not to run untill surgey i dont like sitting around waiting.tell me what you know????????????????????????????????

Comments

  • stevelamont
    stevelamont Member Posts: 3
    #2
    Hi,

    My wife is recovering from extensive soft tissue sarcoma.
    Started just above her left knee in 94. Excised and hi-dose radiation for 6 wks. Then a small lump on her chest in 98. Also excised. Then a big spread into her pelvis, abdomen, spine & lymph in 2001.

    She had 15 or more tumours by 2002 and was offered Ifosfamide and Doxorubicin in combination as a last resort.

    She had to stop the Ifos after one round and continued with Dox for 5 more rounds. This was easy compared with combination.

    She also did supplements to help with nourishment and side effects e.g. flax oil, hydrazine sulfate,co-q-10 to protect heart.

    She is now clear for last 6 mths.

    I can give you lots more information if you want.

    Steve Lamont
    steve.lamont@pyinna.co.uk
  • triiton77
    triiton77 Member Posts: 2
    #3
    I had virtually the same diagnosis, with the exception mine was medium grade. It was behind my right knee. It was close to my nerve and very close to my bone. I caught it very early and have a 70% survival rate in 5 years. Yours sounds better thank God for that. I was up and moving 2 weeks after surgery. Radiation did not stop me at all. I had it for 8 weeks. Radiation will burn you slightly, but after what you and I went through who cares! I did not have any chemo, again thank God. I have trouble standing for long periods or sitting. Its not like I fall down, but its painful. I walk a lot in my job and that can cause trouble too. I suggest good shoes and no basketball for a while. You will play again, but give your knee a chance. I am 1 year out from diagnosis and surgery, and 11 months out from radiation. Arthritis is the problem you will have to deal with. The radiation eats away at your knee padding, that’s where the pain comes from. If you want to talk email me at triiton77@att.net I have not found anyone that has my diagnosis at the same location before. GOD Bless, and stay strong.

    Thomas.
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • dreamer441
    dreamer441 Member Posts: 2
    #5
    I just read your post. Hope I can help. I had a very similar experience 16 years ago. I had radiation and chemo, and am doing fine now. Had to give up some sports, but can do most anything now. Would like to hear back from you.
    Been there
  • jcthomas
    jcthomas Member Posts: 15
    #6
    Was diagnosed and treated in '95 when I was 28 for a stage 3 sarcoma in my right leg hamstring. Order of treatment - High dose chemo (MAID), surgery to remove entire hamstring muscle, internal radiation for one week immediately following surgery, 8 weeks of external radiation, and 3 rounds of follow-up chemo - was supposed to be 6 rounds but side-effects and problems caused my doctor to re-evaluate my prognosis and stop after 3 rounds. I was and still am an avid bicyclist. I have done numerous 100 mile rides and ride regularly throughout the week. I was and have been lucky that the disease was local to my leg only. Many long-term side effects both physically and mentally, but I am alive and every day that I wake up I am thankful. Was treated by a Dr. at U of Md Hospital in Baltimore who now works at Sanai Hospital in Baltimore. Got two opinions at the time, one of Maryland and one from Johns Hopkins. Totally different treatment regimes. Contact me if you want to talk or have questions or for anything. Life is good. Many times difficult but good.
  • Fata79
    Fata79 Member Posts: 7
    #7
    stevelamont said:

    Hi,

    My wife is recovering from extensive soft tissue sarcoma.
    Started just above her left knee in 94. Excised and hi-dose radiation for 6 wks. Then a small lump on her chest in 98. Also excised. Then a big spread into her pelvis, abdomen, spine & lymph in 2001.

    She had 15 or more tumours by 2002 and was offered Ifosfamide and Doxorubicin in combination as a last resort.

    She had to stop the Ifos after one round and continued with Dox for 5 more rounds. This was easy compared with combination.

    She also did supplements to help with nourishment and side effects e.g. flax oil, hydrazine sulfate,co-q-10 to protect heart.

    She is now clear for last 6 mths.

    I can give you lots more information if you want.

    Steve Lamont
    steve.lamont@pyinna.co.uk

    Doxorubicin

    Hi Steve , I know it's been a wile since you posted about your wife . My boyfriend is currently on doxorubicin treatment . He had two rounds and its been really hard on him . He's been suffering from a lot of pain as well . Did it get better with your wife as treatment went on ? How hard was on her ? the pharmacist here are telling me that my boyfriend should not take any supplement for the first 12 days off chemo for interaction . Is that true? 

    I desperately hope to here back.

     

  • rmandarigma
    rmandarigma Member Posts: 2
    #8
    Fata79 said:

    Doxorubicin

    Hi Steve , I know it's been a wile since you posted about your wife . My boyfriend is currently on doxorubicin treatment . He had two rounds and its been really hard on him . He's been suffering from a lot of pain as well . Did it get better with your wife as treatment went on ? How hard was on her ? the pharmacist here are telling me that my boyfriend should not take any supplement for the first 12 days off chemo for interaction . Is that true? 

    I desperately hope to here back.

     

    doxorubicin.

    I had same chemo.  was very hard on me and i did 7 treatments.  I'm scared of it now.  but prior to that i had a tumor the size of a softball removed from my right inner thigh.  they took my sartorious muscle out and moved my grisilis over.  i can no longer run anymore and because of this surgery my knee became weak and had to have surgery on that.  I also had radiation (37 treatments) and that sucked too.  lol.  now i have excema from it and have out breaks all the time.  the sarcoma spread to my lungs and had 3 surgeries on both lungs since nov.  But it keeps coming back.  I have a scan next week and the doc expects more to be there.  He used the words untreatable.  so thats where i'm at after 4 years.  I've been to UNC chapel hill, nc and now in Philadelphia at Penn hospital for treatments.  They said they can do chemo again but this time the new medicine will be alot tougher on me.  I don't know if i can do it again but for my 4 kids it will be a no brainer.  I did not take any supplements for awhile cause my doc said same.  but i did drink alot of green tea and The medicine Marinol which is the best you could take.  its medicinal marijuana pill.  it helps with nausea, anxiety, pain and weight loss.  If he takes anything tell him to ask the doctor for that.  its like a miracle drug for all symptoms of chemo.   i swear by it.  he will get silly and eat alot. LOL.  but its great and worth it.

    hope this helps.

     

  • erlindajq3658
    erlindajq3658 Member Posts: 5
    #9
    rmandarigma said:

    doxorubicin.

    I had same chemo.  was very hard on me and i did 7 treatments.  I'm scared of it now.  but prior to that i had a tumor the size of a softball removed from my right inner thigh.  they took my sartorious muscle out and moved my grisilis over.  i can no longer run anymore and because of this surgery my knee became weak and had to have surgery on that.  I also had radiation (37 treatments) and that sucked too.  lol.  now i have excema from it and have out breaks all the time.  the sarcoma spread to my lungs and had 3 surgeries on both lungs since nov.  But it keeps coming back.  I have a scan next week and the doc expects more to be there.  He used the words untreatable.  so thats where i'm at after 4 years.  I've been to UNC chapel hill, nc and now in Philadelphia at Penn hospital for treatments.  They said they can do chemo again but this time the new medicine will be alot tougher on me.  I don't know if i can do it again but for my 4 kids it will be a no brainer.  I did not take any supplements for awhile cause my doc said same.  but i did drink alot of green tea and The medicine Marinol which is the best you could take.  its medicinal marijuana pill.  it helps with nausea, anxiety, pain and weight loss.  If he takes anything tell him to ask the doctor for that.  its like a miracle drug for all symptoms of chemo.   i swear by it.  he will get silly and eat alot. LOL.  but its great and worth it.

    hope this helps.

     

    hello there.i have also

    hello there.i have also sarcoma diagnosed august 25 2009.i had done needle aspiration and excession.my lump smaller than marble is now so big.i read so much about treatment of sarcoma but i was disgusted to know that all worsen.i am doing acupuncture always.i don't suffer from pain but i hate this lumps that grew bigger and bigger on my left lower leg.let's just hope and pray a lot that whatever approach of treatment we are doing will do good to us.

Discussion Boards