soft tissue sarcoma looking for someone to talk to

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  • bburnsljl
    bburnsljl Member Posts: 3
    #22
    571er said:

    HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.

    abdominal sarcomas
    I have abdominal sarcomas as well and nees help. It started in the uterine, ovary and pelvic area in later 2005, next mets went to stomach, next to bothe (several), now in stomach again. Grows very fast and is painful. Me too so many surgeries, chemos, toms on radiation and brachytherapy. I have asked about Gleevac, but dr, says not for me for GIST. I do not think it matters at this point what we try. Who is your dr.? and do u suggest him or another. I am stuck in Orlando, and need guidance. 407 461-5468 jr
  • bburnsljl
    bburnsljl Member Posts: 3
    #23
    cszj said:

    Liposarcoma in the abdomin
    So happy to hear you have had success! My husband was "misdiagnosed" with renal cell cancer 18 months ago. The mass was found and it was engulfing his kidney. We were told to see a urologist immediately and that the kidney had to come out.
    2 weeks later, it did, but then pathology didn't know what type of cancer it was. After 2 weeks of testing and sending it to Brigham Young in Boston, it was determined to be a liposarcoma. Our oncologist in Jersey strongly recommnended we go to Sloan Kettering in NY as they had specialists there who see this cancer much more often than anyone else.
    There is residual cancer tissue remaining from his initial surgery, and the doctor at Sloan has been monitoring it for the past 18 months. Last September, they had to go into his lung to take out a small spot which they believe was a metastisis. The residual cancer tissue has not moved or grown since his initial surgery, however, dr. says it must come out sooner or later. They consider it to be non-aggressive which is good, but it can turn at any time. Chemo does nothing for this type of cancer and surgery is the only solution. Chances are very high that once removed, it will recurr again, and then surgery will be needed again. It has been a difficult road so far, and we have a limited support system. We have two children, 15 and 11. This has turned our lives upside down. If you or anyone has some information about this type of cancer, I would appreciate hearing more. My prayers are with you as we all battle this horrible disease.

    adenosarcoma w/ mets
    I too was misdiagnosed here in Florida with a borderline tumor, that turned out to be 'hi gr.3 mullerian adenosarcoma w/ sacromatous overgrowth (20 cm). Much came out hysterectomy,oopherectertomy, lymphadectomy, omentectomy, no clear margins whatsoever. No dr. seems to knoe anything about adenosarcoma.I would greatly appreciate it if u could guide me to the best hospital and or dr. u have found. My dr. and the moffitt and md andersen have seen liposarcoma, but claim not adenosarcoma.I have had 4 mets. with surgery 2 more times chemo, radiation and chemo again after rad. Other times more chemo, radiatin and more chemo. Getting pretty worn out and tumor still feelss like it is growing. Help please.
  • rose_hadds
    rose_hadds Member Posts: 34
    #24
    nataliet2105 said:

    fibromatosis and Gleevec
    I'm 23 and have a soft tissue non cancer tumor in my calf. Officially fibromatosis. Very rare tumor etc. I was on Chemo when I was 15 and it seemed to stop the growth. I'm still endure pain everyday. I recently moved to Boston where a sarcoma specialist is wanting to put me on Gleevec. Not sure whether to go for it and try or wait it out. Like I said I don't have cancer but it is a highly aggressive tumor. Can't do surgery because of size and location. It doesn't really interfere with my everyday life -- yes painful but I can live with it and have been for 7 years. Has anyone been on Gleevec for something similar and if so how did you react? Side effects etc??

    sarcoma
    I went through 10 mths of treatments for Ewings sarcoma of the soft tissue of the back of my neck with mets to my lungs.At the age of 44 this is very rare as it is a childhood cancer. Chemo first shrunk everything and partial lung removed in January with 4th round of chemo and 35 radiation treatments to back of my neck/head to end it all. Waiting scans in August and am a nervous wreck. Sarcomas are all apparently rare. My body has been to hell and back but my prognosis is good. I am still so scared of dying and leaving my family. I am sure everyone else feels similar - how do you cope? Living with cancer is the toughest thing to do and still live life. This is my first time writing to this site - any help we can give each other would be great.
  • Mitchelle
    Mitchelle Member Posts: 2
    #25
    cheylaineb said:

    Keepin praying, keep faith miricals do happen
    I am a 14 year cancer survivor and I had soft tissue sarcoma in my left arm. I it start out as the size of a pea when I was 17 year and was misdiagnosed as fatty tissue it didn't start growning until I was 19 year old it got to the sized of a golf ball my sister encourage me to go to a specialist and he was not clear on what it was. I got a biopsy done and it came back cancerous. The surgeon did surgery. I assuming he never perform surgery on this type of cancer and he removed it wrong. I found 2 month later there were piece still left in my are. I then went to Cleveland Clinic they took Awesome care of me.
    I had a 25% chance. I was told my sarcoma was in stage 5 the last stage. I had get surgery again and the rest of the sarcoma removed. I choose not to get amputation of my arm and chemotherapy. I figure if it was in its last stages it had already spread. I did radiation treatment and I have been in remission for 14 years. Keep hope, keep praying, and keep your spirit up. During my fight I kept my spirit up and kept living. I went to my treatment like I was going to see my future and my faith played a huge role

    Cleveland Clinic
    Hi -

    I read your post, my sister was just diagnosed with Stage IV spindle cell sarcoma and is being treated at the cleveland clinic. Who is your doctor? What type of treatment did you have? I am so happy to hear of your remission and would love any insights of things my sister could do to survive.
  • Sandy C.
    Sandy C. Member Posts: 4
    #26
    mernp50 said:

    faith and miracles
    I was diagnosed in May with liposarcoma of the right thigh. I had surgery to remove the tumor that weighed 4 lbs and am in radiation now. I understand the faith and I know about the worry. I have lots of friends praying for me and I am sure you do too. This is a strange disease and it sends me on a rollercoaster every day...(did I mention I HATE rollercoasters)...I will be praying for you as you journey through this too.

    Faith is what gets us though
    In September of last year I was diagnoised with soft tissue sarcoma after several months of going to emergency room with pain in left hip.(where it started first they say but it wasn't till Sept that year thinking I was having a heart attack did the doctor find I had a tumor in my left lung that was pushing on the heart. Then in May of this year when I was finally going thru my first trial chemo after being told that there wasn't any other on the market for mine, that we were flooded out of our home with the cloths on our back. Then one month to the day I was in a accident that broke one vertibrae and my left wrist. If it hadn't been for my faith that God was in control of all and that if that all hadn't killed me then He has plans for me. Without my faith there is no way I could make it.
  • Linda1234
    Linda1234 Member Posts: 11
    #27
    bburnsljl said:

    adenosarcoma w/ mets
    I too was misdiagnosed here in Florida with a borderline tumor, that turned out to be 'hi gr.3 mullerian adenosarcoma w/ sacromatous overgrowth (20 cm). Much came out hysterectomy,oopherectertomy, lymphadectomy, omentectomy, no clear margins whatsoever. No dr. seems to knoe anything about adenosarcoma.I would greatly appreciate it if u could guide me to the best hospital and or dr. u have found. My dr. and the moffitt and md andersen have seen liposarcoma, but claim not adenosarcoma.I have had 4 mets. with surgery 2 more times chemo, radiation and chemo again after rad. Other times more chemo, radiatin and more chemo. Getting pretty worn out and tumor still feelss like it is growing. Help please.

    Also misdiagnosed in Florida

    My mother has had a very similar situtation. I would like to know if you have had any responses.

    I hope you are doing well.

    Linda

  • t123
    t123 Member Posts: 24
    #28
    Linda1234 said:

    Also misdiagnosed in Florida

    My mother has had a very similar situtation. I would like to know if you have had any responses.

    I hope you are doing well.

    Linda

    I to have angiosarcoma in fl

    Linda, I live in the Tampa Bay area (Clearwater). At first they thought I had breast cancer, but after the biopsy I was dx w/ angiosarcoma of the breast. I have had 6 chemo treatments & my 2nd scan shows it has not spread.. I'm in stage 3..: Where is your Mother getting treatment? I going to Fl cancer specalists. Chemo was not that bad. I go in for surgery next week. I wish you all the best.. Cathy

  • nanapat6225
    nanapat6225 Member Posts: 3
    #29
    bburnsljl said:

    abdominal sarcomas
    I have abdominal sarcomas as well and nees help. It started in the uterine, ovary and pelvic area in later 2005, next mets went to stomach, next to bothe (several), now in stomach again. Grows very fast and is painful. Me too so many surgeries, chemos, toms on radiation and brachytherapy. I have asked about Gleevac, but dr, says not for me for GIST. I do not think it matters at this point what we try. Who is your dr.? and do u suggest him or another. I am stuck in Orlando, and need guidance. 407 461-5468 jr

    Scarcoma

    Since you live in Orlando try calling Shands in Gainville.I lived in Crystal River and was tranfer to Shands after finding out I had a 20 pound surcoma in my stomach the surgon Christine Shaws is great. good luck

     

  • MoonMoehring
    MoonMoehring Member Posts: 1
    edited September 2019 #30
    Sarcoma

    Level. THi I  was diagnosed with high grade sarcoma stage 4 . They removed  a 18 pound tumor from my utterine and in all my lymph nodes in 2012.  The Baylor  Dr don’t care much because I didn’t have insurance and if course I wasn’t working at the time due to being hospitalized. I was employed though. He old me he was going to do my emergency surgery but that he spoke to a dr in Tyler Texas Nd since he was doing the surgery the Tyler dr mud o the “charity“ radiation and chemo. He was all about money! Ole Dr Koon at Texas Oncology.  He said he was done doing chairty work. He said call and remind me and I’ll get your treatments set up with the Tyler Dr. Well that never happened, although I called him religiously three times a week. By the time he decided to do something it was too late . Seven months had passed. I became very sick . In major pain in my stomach. I called his office to tell him. He didn’t care he said I’ve referred you Parkland in Dallas call them. That is the Dallas community hospital. The cancer had spread to my stomach. They scheduled me for emergency surgery. They did a bowel resection. They said I had maybe 2 1/2 years to live. Well it has been pure hell . I am gratful  to say it’s been 5 years But I am grateful that I am till alive. It was way too late for any radiation. I went through the Red Devil Treatment. Six full sessions. It was hard but I did accomplish it. I was more sick than the word. I was hospitalized for each one of my treatments for 4 days. When I returned home I was sick for two weeks and in the third week I was feeling somewhat better.  Only for a few days then it was time to go again. Every three weeks or 4 days of radical chemo. The red devil deserves its name ten fold. It consists of Adriamycin, osphosfamyde  and mesa. I’m here I am here. I have cancer if the soft connective tissues. The chemo was so harsh it has damaged my heart. I was like a Time bomb walking around waiting to blow up with blood pressure off the Richter scale. 180/110 My drs are trying to get that regulated to a somewhat normal. Here is one major word of advice to you. I am a really tough woman. If I can help it there is nothing goI gonna take me down. Mind over matter. You must stay tough and stand tall. Get a attitude with cancer ! KICK CANCERS ****! If I CAN KICK CANERS **** YOU CAN TOO!

     

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