Should I have chemo for synovial sarcoma?

dkb1998
dkb1998 Member Posts: 4
edited March 2014 in Sarcoma #1
My name is Daniel, I have a wife and two children, and three months ago I was diagnosed with synovial sarcoma with primary site in my lung. I've had half of my left lung resected and the margins looked clear. Originally my oncologist indicated that other treatments may not be necessary, but after discussing my case with other oncologists, she has suggested that I have chemotherapy. We've heard that there is a possibility for future heart failure and luekemia and are unsure if I should proceed with chemo. Is there anyone out there who can offer their two cents of advice?

Note: I had hodgkin's disease while in high school and received chemotherapy then; as a result, my doctor is recommending that I have only half of the optimal number of treatments to protect my heart.

Comments

  • cassilly
    cassilly Member Posts: 9
    #2
    Hi Daniel.
    Since sarcomas each behave very differently, you should research the medical data bases to see what the thoughts are. Sloan Kettering in NYC and MD Anderson in Houston, both have sarcoma experts. Use the NCI, National Cancer Institute ..cancer.gov and look up your specific diagnosis. They also have current clinical trials listed.
    I am assuming that adriamycin is the chemo that you are concerned about effecting your heart. I have received this chemo in the past...several times. We now know, that with a slower infusion, the side effects are lessened. I also know, that it can be overwhelming when you sit down and read all the side effects possible. Get another opinion...even if you ask your MD to phone Dr. Maki, at Sloan, or Dr. Benjamin, at MDA. If you are at a major cancer center, they will have access to other cancer centers info.
    Sorry to ramble, but I am a 13 year sarcoma survivor...dealing with my 6th recurence. I thought I would never do chemo again, but I have a 10yo daughter and am willing to do anything that may give more more time with her. I am currently taking a drug called Gemcitabine and waiting to see if it works.Best thoughts for your decision. Let me know how you are.
    Rebecca
  • PatiM
    PatiM Member Posts: 4
    #3
    I am being treated for fibrohystocytoma (soft tisse sarcoma) and I had my right quadricep (rectus femoris) removed followed by radiation. Tomorrow I start chemo treatments. One of the drugs they are giving me has the potential to be cardiotoxic (Adriamycin), I have had a MUGGA scan and all seems well so I choose to have the chemo. reducing my hcances of recurrence remarkably. I recently wen on the BY My Side Network and was connected by tele. to a woman who is a 23 year survivor of synovial sarcoma which was in her hip. SHe had surgery at Sloane Kettering and went through chemo. also using Adriamycin and another chemo med I was not familiary with. She was given 5 years and has been in remissions for 23 YEARS!!! Hope this helps. Don't hesistate to e-mail me if you want to chat or possible I w8ill hook up with you in the chat room. God BLess! I prayer that God helps you with this difficult decision.
  • jcthomas
    jcthomas Member Posts: 15
    #4
    I was diagnosed with a soft tissue sarcome in 1995 and have been in remission for 8 years. I had a large high grade tumor in my right leg hamstring. I had a stem cell transplant which was accompanied by the MAID protocol of chemo drugs, followed by surgery to remove my hamstring, internal and external radiation, and then 3 more rounds of chemotherapy.

    I am now 36 and though I have some side effects from the chemotherapy none have been organ related. In the past I have told myself and people close to me that I would never undergo the chemotherapy again but I have 5 year old twin boys and presented with having to fight cancer again I would probably do whatever was necessary to stay alive. The side effects for each individual are different and your lifestyle and overall health definitely can have an impact on how the chemo affects you while receiving the treatment and for years following the treatment.

    I agree with one of the above replies in that you should seek another opinion, preferrably from an expert in the field of sarcomas and their treatment. I was treated at the University of Maryland by an excellent medical team that was at the time following the same protocol as the team at Washington Hospital center in Washington D.C., and though it was extremely difficult I feel the treatment has given me confidence in fighting the disease.
  • melba
    melba Member Posts: 3
    #5
    cassilly said:

    Hi Daniel.
    Since sarcomas each behave very differently, you should research the medical data bases to see what the thoughts are. Sloan Kettering in NYC and MD Anderson in Houston, both have sarcoma experts. Use the NCI, National Cancer Institute ..cancer.gov and look up your specific diagnosis. They also have current clinical trials listed.
    I am assuming that adriamycin is the chemo that you are concerned about effecting your heart. I have received this chemo in the past...several times. We now know, that with a slower infusion, the side effects are lessened. I also know, that it can be overwhelming when you sit down and read all the side effects possible. Get another opinion...even if you ask your MD to phone Dr. Maki, at Sloan, or Dr. Benjamin, at MDA. If you are at a major cancer center, they will have access to other cancer centers info.
    Sorry to ramble, but I am a 13 year sarcoma survivor...dealing with my 6th recurence. I thought I would never do chemo again, but I have a 10yo daughter and am willing to do anything that may give more more time with her. I am currently taking a drug called Gemcitabine and waiting to see if it works.Best thoughts for your decision. Let me know how you are.
    Rebecca

    hi, my name is melba. i am a 8 year survivor if fibrosarcoma. my right hand was amputated and the CHEMO is what saved my life. all sarcoma's are different but i think your survival rate is better with chemo. i had the old bad kind of chemo but i would do it again. best wishes and GOD BLESS.
  • kflindquist
    kflindquist Member Posts: 5
    #6
    My name is Kathy. I also have a history of Hodgkin's disease and now have sarcoma. It started as fibrous histiosarcoma in my abdominal muscle, which was surgically removed 3 times in 3 successive years. Last year, it metastasized into leiomyosarcoma in my lung. Three months after a wedge resecction, it showed up again in the lung. I went through 6 months of adriamycin and ifex treatments, ending last June. In October, I had pneumonia and congestive heart failure. Doctors think the heart failure was due to a combination of damage from chemo, and fluid buildup from the pneumonia. I have been home from the hospital for 3 weeks, and am getting much stronger. If I had it to do over, I think I would still get the chemo. If I hadn't, the sarcoma would have spread and killed me. I expect to recover fully from the heart failure, and there is a good chance the damage to my heart will heal.

    Your last post was April 2003. Did you get the chemo? How are you now? Did you get radiation when you had Hodgkins? Do doctors think that is what caused the sarcoma?
  • paulnabil
    paulnabil Member Posts: 1
    #7
    cassilly said:

    Hi Daniel.
    Since sarcomas each behave very differently, you should research the medical data bases to see what the thoughts are. Sloan Kettering in NYC and MD Anderson in Houston, both have sarcoma experts. Use the NCI, National Cancer Institute ..cancer.gov and look up your specific diagnosis. They also have current clinical trials listed.
    I am assuming that adriamycin is the chemo that you are concerned about effecting your heart. I have received this chemo in the past...several times. We now know, that with a slower infusion, the side effects are lessened. I also know, that it can be overwhelming when you sit down and read all the side effects possible. Get another opinion...even if you ask your MD to phone Dr. Maki, at Sloan, or Dr. Benjamin, at MDA. If you are at a major cancer center, they will have access to other cancer centers info.
    Sorry to ramble, but I am a 13 year sarcoma survivor...dealing with my 6th recurence. I thought I would never do chemo again, but I have a 10yo daughter and am willing to do anything that may give more more time with her. I am currently taking a drug called Gemcitabine and waiting to see if it works.Best thoughts for your decision. Let me know how you are.
    Rebecca

    Hi Rebecca,

    Im dealing with my 5th recurrence of synovial sarcoma in my left chest wall next to my heart/aorta. I dont have a surgical option anymore. I am looking to chemo, and will likely try gemcitabine alone or with taxotere.

    You mentioned that you were trying this. How has it been so far? any response if you dont mind me asking?

    also, where is your disease?

    best wishes to you and many thanks,
    Paul
  • survivor7
    survivor7 Member Posts: 6
    #8
    I am the mother of a 23 year old son just diagnosed with synovial sarcoma. I have been researching and have found that the best prognosis for survival is surgery, chemo and radiation.The combination of doxorubicin and ifosfamide has had good results. Also look into Tyrosine Kinase Inhibitors such as Herceptin,Gleevec and Iressa that work at the molecular level. I am praying for you and your doctors.LOng life and good health.
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator
  • alsaflan
    alsaflan Member Posts: 2
    #10

    On Sept 4th, 2013; My wife had surgery removing synovial tumor encasing the aorta and its size is 8 cm. Now, we been asked to start chemotherapy (CTH) to eliminate its cells left or possible been distributed anywhere else and avoid reoccurrences. We need two days to take a decision to accept starting the CTH and kindly I need your opinion.

    From the search i have done so far, it seems with using CTH; the tumor will reoccur maximum within 5 years, 60% tumor respond to CHT for less than 5 cm size, and even researches do not find yet the right effective chemical for it (the latest are doxorubicin and Ifosfamide).  CHT now planned for 6 cycles/dosages of the painful risky CHT treatment.

    I would rather not use CHT now specially during surgery healing time, and keep close monitoring in future. In this case, we will give more time for chance to see better treatment in future, do less surgery and/or less dosage of CTH since it should be less than 5cm that time if needed.

    I need your advice that may I miss something or mistaking. you may approach me at alsaflan@gmail.com

    Regards,

  • gaby9
    gaby9 Member Posts: 2 Member
    #11
    Synovial sarcoma attached to bottom left lung

    Hello, I was recently diagnosed with synovial sarcoma on February 27th. My tumor was 4.3 centimeters and attached to the bottom of my left lung. I had surgery and after surgery I was told my margins were also clear. My oncologist strongly recommended I do chemo therapy as a precaution, in case there were any cancerous cells lingering somewhere in my body. I decided I would go ahead and do it. I had a combination of IFEX/adriamycin/MESNA and finished my 6 rounds of inpatient chemo on July 28th. When the doctor first spoke to me he did not think I would need Chemo, but after speaking with other doctors he felt I should get it. Once I finished my chemo I began 35 rounds of radiation, I will be done this upcoming week. The doctor thinks I have a good prognosis, but I personally felt like I had to do both radiation and chemo because in the long run if I hadn't done it and the cancer returned I would be left wondering "what if".

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