Soft Tissue Sarcoma

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  • BigSis2Court
    BigSis2Court Member Posts: 1
    #22
    mkrees said:

    okay this is a year late, so I hope and pray that you are doing well. I was diagnoised with Malignant Perphial Nerve Sheath Tumor back in 1992, when I was 18. Mine was in my right chest. I had 3 surgeries, the last one being in 1998. I have had the two upper lobes on my right lung and four ribs removed and way back in 1992-1993 went through chemotherapy. I went to MD Anderson Cancer Center for the majority of my treatment and my oncologist at the time hadn't seen this type of soft tissue sarcoma before. My last surgery was here in Oregon though and went well. My doctors debated at the time whether or not I should have radiation as this was my second recurrance and decided that it wouldn't do any good. The surgeon got it all though and I feel very lucky about that.

    hi mkrees!
    Your situation sounds so similiar to my 27 yr old sisters. Her sarcoma is mpnst as well. She is now at MD Anderson fighting for all she is worth, down to 75 lbs. She had an 18 hour surgery to remove a sarcoma mass from her right chest wall that the thoracic surgeon said was encapsulated, all the scans showed that as well, however once he got in he did find 4 nodules on her lung and removed them. The margins from her mass in her chest wall were tested, and were clear of cancer cells. She was going to have to have several ribs, part of her diaphram, and possibly a few vertebrae removed, but they ended up not having to do that. She did end up with a spinal fluid leak because the fibroma was attached to her derma surrounding her spinal column. It collapsed during surgery so they patched it, but a week later she was dizzy nauseated and leaking from her bandages clear spinal fluid. They thought they would have to go back in and fix it but with much prayer and only a 1 in 10 chance of it healing on its "own" it healed! I pray that this is all there is. She has NF too, and sarcoma tends to be more aggressive with people who have neurofibromatosis. Just wanted to talk to you because its reassuring to talk with people who are surving this cancer it gives me hope for my only sister Courtney. I would love to correspond with you, please let me know how you feel about
    that. I am in the chat room often, my user name is bigsis2court. keep fighting!
    kim sadler
  • mkrees
    mkrees Member Posts: 2
    #23
    BigSis2Court said:

    hi mkrees!
    Your situation sounds so similiar to my 27 yr old sisters. Her sarcoma is mpnst as well. She is now at MD Anderson fighting for all she is worth, down to 75 lbs. She had an 18 hour surgery to remove a sarcoma mass from her right chest wall that the thoracic surgeon said was encapsulated, all the scans showed that as well, however once he got in he did find 4 nodules on her lung and removed them. The margins from her mass in her chest wall were tested, and were clear of cancer cells. She was going to have to have several ribs, part of her diaphram, and possibly a few vertebrae removed, but they ended up not having to do that. She did end up with a spinal fluid leak because the fibroma was attached to her derma surrounding her spinal column. It collapsed during surgery so they patched it, but a week later she was dizzy nauseated and leaking from her bandages clear spinal fluid. They thought they would have to go back in and fix it but with much prayer and only a 1 in 10 chance of it healing on its "own" it healed! I pray that this is all there is. She has NF too, and sarcoma tends to be more aggressive with people who have neurofibromatosis. Just wanted to talk to you because its reassuring to talk with people who are surving this cancer it gives me hope for my only sister Courtney. I would love to correspond with you, please let me know how you feel about
    that. I am in the chat room often, my user name is bigsis2court. keep fighting!
    kim sadler

    Hi Kim,

    I'll pray for your sister. She can make it, I know that. Her situation does sound similar to mine. They told me before my first surgery that they would remove my entire lung, but they didn't. I still have one lobe left. I was surprised that they removed some ribs, part of my diaprhram and part of my heart sac. The tumor had pushed my heart to the left side of my chest and I was VERY lucky that it didn't enter my heart or I probably wouldn't have survived long. I'm 30 now, so it's been 12 years since I was diagnoised and my chances were apparently not good, but here I am. I married (got the second recurrance for a first anniversary present) and since my last surgery have had two little boys.

    I don't have NF, but I think my mom might. She is covered in cafe au lait spots. I only have one cafe au lait spot and it is directly over where my tumor was.

    I would love to correspond with you, but it's been years since I've had any treatment so I am not up to date on things.

    Mary Katherine Rees

    p.s. are you in Houston with her? My mom and two of my brothers still live there.
  • carollh
    carollh Member Posts: 3
    #24
    I'm new to this site. My daughter was diag.with soft tissue sarcoma 9/03. She had 2 rounds of chemo and 6 wks of radiation. Then surg. Recently after a ct scan, we were told there are a few nodules in each lung. They are planning to do more chemo with gemzar. Anyone have anything positive to tell me about all this. It is so devastating. Thanks Carollh
  • carollh
    carollh Member Posts: 3
    #25
    cwessels said:

    A very dear friend of mine also had a malignant nerve sheath tumor. She also has neurofibromatosis. The cancer has now metastisized to her lung and spine. She will begin her first round of chemotherapy Monday. How are you? I know my friend is wanting to correspond with someone who may be experiencing similar issues. I wish there was something I could do.

    Hi cwessels, I just read your message & wanted to talk. My daughter is 27yo & was diagnosed with mnst 9/03. Had Ifosfamide & Adriamycin chemo which didn't help her tumor. Radiation helped more. Surg. to remove it was next after radiation. Tumor was encapsulated, but it has already spread to her lungs. Now she is getting Gemzar & Taxotere chemo. for her lung tumors. It is so difficult seeing her go thru this. Difficult to have a positive attitude as well. I just pray we are doing the right thing. We have to trust her oncologist. I am fearful of her next chest xray in 4 wks. I will be devastated if there hasn't been any improvement. Help. Carol
  • PinkyMink
    PinkyMink Member Posts: 1
    #26
    Hey guys. My name is Jillie and I too was diagnosed with MPNST when I was just 17. The cancer Center near my home told be to go home and enjoy my last year as much as I could.
    My parents, alwaysy my dedicated didnt rest until they found the one surgeon in the world that would attempt to resect the tunor, which was thought to start at the base of my brain, wrap its way into my ear canal, wrap iself around my facial nerves, carotid artery, jugular, and all that other good stuff. I was givevn less than a %5 chance of coming out of the 18 hour surgery. If I was to survive I would most likely be a human vegetable because the part of the brain that controls conciousness, breathing, heart beat were all involved.
    During the surgery it was found that my tumor continued down into my chest.
    To make a long story short, I have just about every Cancer Institution in the US studying my case because I had the largest MPNST in medical history to their knowledge.
    I had to learn how to eat, talk, walk, and take care of myself all over again. When I was just starting to recover I am whisked away to a cancer research hospital to try some experimental treatment. I was patient #1 in their protocol study, and to the best of my knowlege I am the only patient of the study that survived the high dose chemo, and 66 grade radiation.
    I have had every complication you can think of, from Menagitis to a fungus that gew in my blood stream and stop my temperature up 5 degrees in 15 minutes. That was fun.
    Long story short, I take a licking but I keep on ticking, and from what I have read it seems like you all are strong too.
    I would be honored to hear from any of you. Perhaps we could share "old battle stories and compare battle wounds".

    Please please please email me at my AOL address. Its Jumbledjillie@aol.com . Please type MPNST in the subject so that I can identify the content of te mail before I delete it with all the spam I get.
    I am so excited and can't wait to hear from any of you, and all of you. Us Malignant peripheral nerve sheath tumor Guys have to stick together, don't we?
    Once again my email is: Jumbledjillie@aol.com
    Its been great reading your stories and I hope all of you are well and happy :)
    God Bless
    Jillie
  • MJ1006
    MJ1006 Member Posts: 9
    #27
    PinkyMink said:

    Hey guys. My name is Jillie and I too was diagnosed with MPNST when I was just 17. The cancer Center near my home told be to go home and enjoy my last year as much as I could.
    My parents, alwaysy my dedicated didnt rest until they found the one surgeon in the world that would attempt to resect the tunor, which was thought to start at the base of my brain, wrap its way into my ear canal, wrap iself around my facial nerves, carotid artery, jugular, and all that other good stuff. I was givevn less than a %5 chance of coming out of the 18 hour surgery. If I was to survive I would most likely be a human vegetable because the part of the brain that controls conciousness, breathing, heart beat were all involved.
    During the surgery it was found that my tumor continued down into my chest.
    To make a long story short, I have just about every Cancer Institution in the US studying my case because I had the largest MPNST in medical history to their knowledge.
    I had to learn how to eat, talk, walk, and take care of myself all over again. When I was just starting to recover I am whisked away to a cancer research hospital to try some experimental treatment. I was patient #1 in their protocol study, and to the best of my knowlege I am the only patient of the study that survived the high dose chemo, and 66 grade radiation.
    I have had every complication you can think of, from Menagitis to a fungus that gew in my blood stream and stop my temperature up 5 degrees in 15 minutes. That was fun.
    Long story short, I take a licking but I keep on ticking, and from what I have read it seems like you all are strong too.
    I would be honored to hear from any of you. Perhaps we could share "old battle stories and compare battle wounds".

    Please please please email me at my AOL address. Its Jumbledjillie@aol.com . Please type MPNST in the subject so that I can identify the content of te mail before I delete it with all the spam I get.
    I am so excited and can't wait to hear from any of you, and all of you. Us Malignant peripheral nerve sheath tumor Guys have to stick together, don't we?
    Once again my email is: Jumbledjillie@aol.com
    Its been great reading your stories and I hope all of you are well and happy :)
    God Bless
    Jillie

    Hello, My name if Michelle J. (MJ1006). I have high grade soft tissue sarcoma. Last June of 2003, I underwent a left radical neck surgery, the tumor was 10 + size, The even removal part of my left shoulder that tumor was also inside in the muscels back there, So in Sept.04, I went through Ifosamaide chemo, x4 cycles, then in April 05, the tumor repeared in the neck again, Surgery again but this time with internal radiation. So now I'm strugling with this dieased again, It return again and also has metasized in the right lung, (there very small but there two places as there. So today I under went PICC line insertion. Because I start another trype of Chemo
    DICT and adramycin. So I'll have 5 days of hell week again. Then hopefully in Dec. of 05, I "ll have my strenght for another surgery to remove the dead tumors in the lungs and neck. Having sarcoma never ends. You try not to think about it but sometimes the pain Because somebody you have meet w/ cancer is in worse shape than myself.
    MJ 1006 or Angel34mj@aol.com ( I'm like you enter the word sarcoma before I open my mail.
  • Unknown
    Unknown
    #28
    This comment has been removed by the Moderator
  • ncaines
    ncaines Member Posts: 3
    #29
    CONNIEUSA said:

    I AM 48 YEAR OLD MOTHER,,OF 3 BOYS,,,,I HAVE BEEN DIAGNOSED WITH MYXOINFLAMMATORY SARCOMA,,,,IT AFFECTS THE EXTREMENTIES,,,I HAVE IT ON MY LEFT THUMB,,,,DRS AT THE UNIVERSTIY OF MICHIGAN,,SAYS ITS SOOO RARE,,,,ONLY 44 DOCUMENTED CASES IN THE WORLD SINCE 1949,,,,,,,,,,,,WHEW,,,,AND I AM NUMBER 45,,,THEY NEVER SAW THIS BEFORE AND SAID THEY PROBABLY NEVER WOULD AGAIN,,,,CHANCE OF ME WINNING THE LOTTERY IS MUCH BETTER,,,SO THE DRS AND ME HAVE DECIDED TO GO AHEAD AND AMPUTATE MY THUMB,,,,SO REOCCUANCE DON'T HAPPEN,,,,I HAD SURGURY ON IT A MONTH AGO,TO TAKE OUT THE TUMOR,,,BUT IT IS GROWING BACK,,IF THEY LEAVE JUST ONE CELL THERE,,,,,IT GROWS BACK,,,,,,,,,,,,,,,SOOOOOOO PLEASE GIVE ME SUPPORT,,,,,,,,,,,,,,,,,AND PRAYERS,,,,
    EMAIL,,IS CONNER007@AOL.COM

    Synovial Sarcoma in the Hand
    My name is Natasha and my husband was diagnosed with Synovial Sarcoma in his hand in the soft tissue between the thumb and index finger. Interesting to share stories.
  • ncaines
    ncaines Member Posts: 3
    #30
    saramac said:

    i have a similiar sized scar on my hand after my sarcoma was removed, i too have small lumps. Apparently these are not dangerous but we are bound to be wary of everything especially due to the high percentage of re occurence in these cases. Good luck with any remaining treatment

    Synovial Sarcoma in the Hand?
    Hi my name is Natasha and my husband had a tumor removed from his hand. Would be interested in knowing more and treatments given. Thanks

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