Synovial Sarcoma survivors wanted! Would love to hear stories!

124

Comments

  • Chwatkins
    Chwatkins Member Posts: 1
    #62
    doctortad said:

    thank you
    Hello amore12,

    My wife of ten years was diagnosed with synovial sarcoma 2.5 years ago. It had been undiagnosed in her leg for 13 years. She kept all her old doctor visit reports and reading them makes me want to cry. Had it been discovered way back then it would have been grade 1 instead of grade 3. Up until 2 weeks ago I thought she had been given a 68% chance of making it this long, when she told me that her doctors said it was more like 25% chance. I've been devastated ever since. I am scared for her, scared for our sons and scared for me. Reading about good people like yourself who have beat the odds and have continued to go on give me some hope. I love mer so much and can't imaging life without her. Thanks to you, amore12, maybe I'll be able to imagine having more time with her. Our older boy gave me his perspective this morning. He said, "We don't have any control over it, so enjoy the time we have, hope it doesn't come back, and meet it head on if it does. We haven't told our younger son.

    My wife is away at a conference for a week and I am missing her like crazy. Take care of yourself.

    Tad

    Synovial Sarcoma in my leg too
    Hi there,
    I read your story and could not help myself....I just had to reply.
    I to was diagnosed with a sarcoma. I was diagnosed in 2010. I am 34 yrs old and have been carring this with me since I was in high school and did not have a clue. I had always had pain and tenderness. In 2010 I developed a lump that just kept growing. The first dr. told me that it was a hernia. 2nd dr says it was an infected lymphnode and I went down for surgery. When I woke up they told me that they found a cancerous tumor. I immedialtely began chemo and then one last surgery. It was successful. I have been in remission for 1yr and 10mths. I pray that it never comes back. I hope that your wife, you and your family have many more years of love and blessings:)
  • campsie46
    campsie46 Member Posts: 6
    #63
    Hi Scarlett
    I have survived
    Hi Scarlett

    I have survived 10 years without reoccurenceI am now 45 was diagnosed with tumor in elbow at 34. They took it away and not worried until now. I have a swelling st back of knee hoping just through excessive driving that I do with my job. Your fab hope you are well and I will let you know my outcome as I am doing a lot of research and found good outcomes.


    Kxxxx
  • campsie46
    campsie46 Member Posts: 6
    #64
    terryp6590 said:

    Still Going
    My name is terry.
    I have had synnovial sarcoma for 4 years. I got it when I was 16 but was told it was something else. Fours years later a doctor in gainsville finale told me what I had. It was 14cm long and all they could do at the time was amputate my leg below the knee.

    I will be starting chemo april 12. I will be in the hospital for 6 days getting the chemo 5 of those days. At the time it looke like I have had the cancer to long in my body, because it has spread through my blood stream and is in my lungs. My doctors are worries it will turn into lukemea.

    But I am not writting this to be discouraging. I am 20 years old and have had a great life with no regrets. God has been good to me and I have no reason to complain. All I can say is stay strong never give up. You never know what can happen.


    So long and farwell.

    Hi Terry
    Are you ok
    Hi Terry

    Are you ok xxxxxxxxxxxx
  • Mom2will
    Mom2will Member Posts: 1
    #65
    pebs said:

    Hi, I am a 37 year old
    Hi,

    I am a 37 year old female and I was diagnosed with synovial sarcoma of the left forearm 5 days before Xmas 2010. I had the tumour for 23 years and it had always stayed the same size, however the pain it caused if I even tapped it was unbearable and it used to give "electric shock" type pain. It had been diagnosed as many benign tumours such as neuroma, ganglion, glomas tumour and lypoma despite never having a biopsy done. I was told not to have it removed as it was so close to nerves that I would lose use of my arm/hand. I just took the doctors words for it.......

    3 years ago despite it still not growing it became more painful and I decided to take the risks involved with surgery. It was removed and the pathology report diagnosed as a benign schwannoma. 6 months post surgery it returned and continued to grow, this time the symptoms were "different" I had involuntary twitches in my arm and the tumour was more firm. I had what was thought to be a returning schwannoma removed in Dec 2010 and then as I said recieved the bad news that it was a grade 2 synovial sarcoma. I have since had further surgery to obtain a negative margin and have just completed 30 sessions of radiotherapy. I had a full body C.T scan which showed my organs were clear and 2 subsequent chest x rays have also been clear. I see my oncologist in June for my radiotherapy follow up and all I can do now is hope that is the end of it and it does not appear again.

    Best wishes to all who are goiing through the same as me.

    My son is almost 5 years clear
    My son's symptoms are identical to pebs. Ironically we found out a week before Christmas 2006. My son had been experiencing a pain in his left wrist off an on for a year prior. It was not a constant pain, but when he moved his hand a certain way or would bump it, he would latterly fall to the ground in pain. He was 6 years old at the time. We spent over a year with an incompetent dr. Who told us it was a sprain, tendinitis, and then he went as far as to say that sometimes are children have pains we can't explain. I had from the beginning asked if we could do a MRI. He would not because of my sons age. He said that children can't sit still for MRI's and therefore he would have to be put under and that was just too much. He did order a bone scan and X-rays . Nothing. We eventually switched dr's and on the first visit said please give our son an MRI . They did,BTW, he was awake and stayed perfectly still. The results were that he had a tiny ganglion cyst next to his alnur nerve. Wh found a hand surgeon and had it removed. A week later we heard what every parent fears , that our little boy had a very rare cancer called Synovial sarcoma. My husband and I where devastated, but I needed to get busy and find an oncologist quickly. As I said before, it was just before Christmas and I wanted only the best Dr. For my child! I contacted Johns Hopkins and was able to get in with them four days before Christmas.
    To make a very long story short, my son went into surgery to check the margins for any sign of cancer cells because when he had surgery before, the dr. Did not know he was removing cancer. A few weeks later we got a call that the margins were clear. We were so happy and thought we could just move on with just check ups every few months. Well, that was not to be. Three months later at his first rutine MRI post surgery, we were told that there was a reacurance. My son soon started 5 1/2 weeks of daily radiation. Then he would have another surgery to remove half his left hand. They had to remove the alnur nerve to make sure they got all the cancer. The alnur nerve controls the movement of your pinky and ring finger, so they took those fingers so they would not flop around.
    That was September 7, 2007. He has been clear ever since. We currently are going twice a year for check on his hand and once a year chest X-ray. After his check in September, we will only go once a year for the next 5 years.
    As for the Aniety, I do well on a day to day basis, but I get quesey right before our appointments until we get the results from the dr. My son is an amazing kid. He plays football and lacrosse and is really quite good! He recently took up golf and is becoming passionate about that too. There is nothing he can't do. He live his life to the fullest and is such an inspiration to everyone that knows him.
  • 1jackson
    1jackson Member Posts: 1
    #66
    29 years of survivorship and counting
    Hi, Scarlett:
    I was diagnosed when I was 18. The synovial sarcoma was on my left knee, and was mistakenly identified as a cyst, which I asked to be removed because it was bothering me. I ended up going back to college thinking I was all set, only to be called by mother to tell me what I had. I left school early that year, had preliminary radiation, a larger surgery to make sure all was removed, and then an additional summer's worth of radiation. I'm now 47 and doing fine.

    I have participated in the Long-Term Follow-up study, which has been collecting data on cancer survivors for more than 20 years now. I started going to a survivorship clinic at Dana Farber in Boston about 6 years ago - I now am supposed to be seen every two years or so. The focus is on what my treatment means for my future - the radiation I had, the other tests (CT Scans, bone scans, x-rays, etc.) I have had since, and what is known about side effects of those treatments years later.

    I am married and have 2 children who are now 9 and 11. I did get a genetic test (p53) just to make sure there wasn't a hereditary thing going on, but it all came back negative. I also saw a nutritionist at Dana Farber who recommended healthy foods and lifestyle. I agree with others that individual results will vary, but much more is known now than when I was first diagnosed in 1984. There is also a LOT more support - physically and mentally - than when I was going through it. Continue to take advantage of it!

    Good luck. Hope you're doing well.
  • leelovesmoos
    leelovesmoos Member Posts: 1
    #67
    1jackson said:

    29 years of survivorship and counting
    Hi, Scarlett:
    I was diagnosed when I was 18. The synovial sarcoma was on my left knee, and was mistakenly identified as a cyst, which I asked to be removed because it was bothering me. I ended up going back to college thinking I was all set, only to be called by mother to tell me what I had. I left school early that year, had preliminary radiation, a larger surgery to make sure all was removed, and then an additional summer's worth of radiation. I'm now 47 and doing fine.

    I have participated in the Long-Term Follow-up study, which has been collecting data on cancer survivors for more than 20 years now. I started going to a survivorship clinic at Dana Farber in Boston about 6 years ago - I now am supposed to be seen every two years or so. The focus is on what my treatment means for my future - the radiation I had, the other tests (CT Scans, bone scans, x-rays, etc.) I have had since, and what is known about side effects of those treatments years later.

    I am married and have 2 children who are now 9 and 11. I did get a genetic test (p53) just to make sure there wasn't a hereditary thing going on, but it all came back negative. I also saw a nutritionist at Dana Farber who recommended healthy foods and lifestyle. I agree with others that individual results will vary, but much more is known now than when I was first diagnosed in 1984. There is also a LOT more support - physically and mentally - than when I was going through it. Continue to take advantage of it!

    Good luck. Hope you're doing well.

    33 year survivor
    I first was diagnosed 33 years ago when i was 7. I had a recurrence at 24 years old, both treated with surgery . radiation suggested after 2nd occurrence. Went for 1 radiation treatment and haven't doctored for it since. I will be 40 this Wednesday. best wishes!
  • ILOVETHON
    ILOVETHON Member Posts: 3
    #68
    Synovial Sarcoma 4 year survivor

    Hi Scarlett! My name is Dominique and I'm from Pennsylvania. I am 18 and was diagnosed with synovial sarcoma when I was 13. I had a grapefriut sized tumor in my hip/groin and had chemo. radiation, a 14 1/2 hour resection and partial hip and femur replacement surgery and more chemo. I know this probabaly will just make you more paranoid but then I relapsed 3 times in 2 different places. I had 3 lung surgeries, the last one was an inferior lobectomy (removal of lower right lung lobe). Then It came back again behind my esophagus, right beside my heart. But the good news is that I am now 4 months and 10 days NED (No Evidence of Disease)! I try not to be really paranoid and just not think about the scary things, but its hard sometimes. It helps for me to just scream and cry and get things out every once in a while. But the best way is to not think about it or just think about the good things that have come from this. I am glad to have gotten cancer because of all the experiances and amazing new friends I have made through all this. Even though I have had cancer 4 times in just 4 years, I am confident that I will be ok. After all I beat it 4 times too. So don't worry about what could happen in the future, just say I beat you once and if I have to I can do it again and then forget about it. And have fun. :) P.S. you can email me at beardedhamsterdogy@gmail.com if you want. I've only ever met one other person with synovial sarcoma and he's 10.

  • abigailsmith
    abigailsmith Member Posts: 1
    #69
    Finding Peace & Hope- Abigail's Interview

    I’ve been battling Synovial Cell Sarcoma this past year after finding a tumor under my arm in January, 2012. I’ve had times that feel like I’m on a non-stop roller coaster of emotions, as most, if not all of you have experienced in your battles. But throughout this whole experience God’s faithfulness and peace have been so real to me. I’m not giving up on this fight and this short interview explains a bit more about what has happened.

    http://vimeo.com/smithpixels/abigail

    http://blog.abigailsmithphotography.com/2013/01/terminal-cancer-wasnt-in-my-plans/

  • sriaadhi
    sriaadhi Member Posts: 2
    #70
    abigailsmith said:

    Finding Peace & Hope- Abigail's Interview

    I’ve been battling Synovial Cell Sarcoma this past year after finding a tumor under my arm in January, 2012. I’ve had times that feel like I’m on a non-stop roller coaster of emotions, as most, if not all of you have experienced in your battles. But throughout this whole experience God’s faithfulness and peace have been so real to me. I’m not giving up on this fight and this short interview explains a bit more about what has happened.

    http://vimeo.com/smithpixels/abigail

    http://blog.abigailsmithphotography.com/2013/01/terminal-cancer-wasnt-in-my-plans/

    Synovial Sarchoma Survival after surgery and chemo

    Hi all,

    My name is Srini my uncle name is GVMM NAGA RAJU who is suffering with the Cancer deseage called Synovial Sarchoma which primary tumor is localised/located at left lung plura. A brief summary about the Patient's deseage history.

    1. In March 2011 Patient suffered with chest pain and back pain and undergone with some testes reports attached and named as before operation.

    2. Used some Ayurvedic Treatment from April-2011-October 2011 from your institute( Tumer spreads and as per you suggesions we ent for surgery)

    2. In Novener 2011 Patient undergone with surgery and  reports attached and named as post operation discharge summary and also complete Bisopy report attached(we went for Critical surgery and resected with clear margins)

    3.In Decmber 2011 to June 2012 Patient undergone  with Chemo therophy (6 cycles ) and report named as post operation and post chemo discharge sumary

    4.In recent 1st Otober 2012 Patient suffereing with again chest pain and breathihng difficulties and went to Hospital and diagnosed as the tumor re-occured.Report attached as pots operation and post checmo CT scan after 4 months.

    5. Medical oncology doctors team suggested for CT scan , We got CT Scan and found mutiple deposits in and re-occurance of the tumerin the Left luncg uplobe and plueara.

    6. We went for 2nd openion who done the surgery last year, and surgen suggested for us to go with Chemo therophy/pallivated chemotherophy no use of surgery as this is reoccurance and multiple deposits.

    7. Again we went to Medical oncology doctor and hey found new approved medicine called Pazopanib 800mg /400mg. we can test this for few weeks  on prior to move on to pallivated chemothearphy.

    8. We started the Pazopnaib 800 mg for 1st week of November and my uncle(GVMMJN) not able to loerate the side effectes and got sick. we stopped the pazopanib 800 mg for next 10 days and continued with 400 mg for next 2weeks and when ever untolarable we are giving the 1-10 days break and continue with the same 400 mg per day.

    9. We went for CT scan test 3rd week of Jan 2013 and surprising "existing 2 tumers in the left lunng got shrunk(reduced 20-40%) and remianinjg two tumers same size and stable. apart from that a new tumer came in beside to those tumer.

    10. As per Medical oncology doctore new arraaving of the new tumer is a part of this synovial sarchoma and how ever the result is Pazopanib is working and got good ressults.

    11. Medical Oncology Doctor suggsted us to continue with 400 mg per day and till next Scan which is scheduled in the month of April(next 3months after the curret Scan).

    Currently my uncle (GMMMJNR) is tolarable with 400 mg per day per 2 weeks and 1 week break and again 2 weeks. hopefully the way the medicine and deit should manage him to to prevent him from any Sick.

    If any one going for Pazopanib treatment please take the suugeessions fom the concern Medical oncology Doctor on priscription and dosage depends on tolarability of the patient.

    All the best and good luck to every one and keep posting to get immunised our strength to get dying of the cacner and living of the humans.All the best

  • relick
    relick Member Posts: 1
    #71
    Hi Survivors
    my name is

    Hi Survivors

    my name is Don,I'm a  survivor of synovial sarcoma which was located in my colon which apparently is rare.I'm from canada and surgery was done in Ottawa Ontario.These are the best surgeon in Canada.1 of them deal with colon and the other with the sarcoma.They told me that I was the second they have done and i went there the other day and they told me they did a third one.I was diagnosed in Feb 2005.When they found the cancer immidelately  the hospital in ottawa was contacted by  my wife .She did all the work  and she  bi-pass the Doctor that found the tumor in Kapuskasing in my own town.That was on a friday i was told that I had cancer.On the next thursday I was in Ottawa which is 10hrs from where I live.Immediately they put me to ease and told me there is no chemo involved because it's so rare.But I got all the best service in the world with these groups of doctors and don't forget their great secretairies that treats you like one of there own.Right now and then I was encourage.I spent around 6 mths back and forth from my town to this nice city.There remove a section of my colon and 1 doctor sais this might be the a secondary cancer which could come from somewhere else.1 doctor replied No and it's now been 7yrs cancer free and feel great.Thanks to the medicare we have in Canada.They monitor my brain and lungs yearly which scares me because  it's every year instead of every months.I lost both my parents  and they were 54yrs each of them due to cancer.So if you have 1 or more cancer patient in your family you need to get check ASAP because it's in your genetics.Thanks again for your stories it make me feel strong.

     

    Regards,

    Don

  • akshaygupta
    akshaygupta Member Posts: 3
    #72
    BIPHASIC TUMOR-SYNOVIAL SARCOMA IN RIGHT AXILLA

    Hi All,

    3 years ago my brother was diagnosed for a mass of size 8x5x3 mm in his right axilla and the surgeon removed.Biopsy reports of the mass shown no sign of malignancy.But Now in feb 2013 my brother started complaining of pain in his right axilla while trying to move his arm above head.MRI reports suggests that there is a mass regrown at the same sight,biopsy was taken and tested and the surgical oncologist at Rajeev Gandhi hospital,New Delhi,India is suggesting that it is a "BIPHASIC TUMOR FAVOURING SYNOVIAL SARCOMA".Since then its an emotional trauma for my entire family.

    Now we have refered to ALL India Institue of Medical science.And the surgery date is 22nd April 2013should we wait so long..

    please suggest.

    Regards.

     

     

  • akshaygupta
    akshaygupta Member Posts: 3
    #73
    sriaadhi said:

    Synovial Sarchoma Survival after surgery and chemo

    Hi all,

    My name is Srini my uncle name is GVMM NAGA RAJU who is suffering with the Cancer deseage called Synovial Sarchoma which primary tumor is localised/located at left lung plura. A brief summary about the Patient's deseage history.

    1. In March 2011 Patient suffered with chest pain and back pain and undergone with some testes reports attached and named as before operation.

    2. Used some Ayurvedic Treatment from April-2011-October 2011 from your institute( Tumer spreads and as per you suggesions we ent for surgery)

    2. In Novener 2011 Patient undergone with surgery and  reports attached and named as post operation discharge summary and also complete Bisopy report attached(we went for Critical surgery and resected with clear margins)

    3.In Decmber 2011 to June 2012 Patient undergone  with Chemo therophy (6 cycles ) and report named as post operation and post chemo discharge sumary

    4.In recent 1st Otober 2012 Patient suffereing with again chest pain and breathihng difficulties and went to Hospital and diagnosed as the tumor re-occured.Report attached as pots operation and post checmo CT scan after 4 months.

    5. Medical oncology doctors team suggested for CT scan , We got CT Scan and found mutiple deposits in and re-occurance of the tumerin the Left luncg uplobe and plueara.

    6. We went for 2nd openion who done the surgery last year, and surgen suggested for us to go with Chemo therophy/pallivated chemotherophy no use of surgery as this is reoccurance and multiple deposits.

    7. Again we went to Medical oncology doctor and hey found new approved medicine called Pazopanib 800mg /400mg. we can test this for few weeks  on prior to move on to pallivated chemothearphy.

    8. We started the Pazopnaib 800 mg for 1st week of November and my uncle(GVMMJN) not able to loerate the side effectes and got sick. we stopped the pazopanib 800 mg for next 10 days and continued with 400 mg for next 2weeks and when ever untolarable we are giving the 1-10 days break and continue with the same 400 mg per day.

    9. We went for CT scan test 3rd week of Jan 2013 and surprising "existing 2 tumers in the left lunng got shrunk(reduced 20-40%) and remianinjg two tumers same size and stable. apart from that a new tumer came in beside to those tumer.

    10. As per Medical oncology doctore new arraaving of the new tumer is a part of this synovial sarchoma and how ever the result is Pazopanib is working and got good ressults.

    11. Medical Oncology Doctor suggsted us to continue with 400 mg per day and till next Scan which is scheduled in the month of April(next 3months after the curret Scan).

    Currently my uncle (GMMMJNR) is tolarable with 400 mg per day per 2 weeks and 1 week break and again 2 weeks. hopefully the way the medicine and deit should manage him to to prevent him from any Sick.

    If any one going for Pazopanib treatment please take the suugeessions fom the concern Medical oncology Doctor on priscription and dosage depends on tolarability of the patient.

    All the best and good luck to every one and keep posting to get immunised our strength to get dying of the cacner and living of the humans.All the best

    Hi Srini..

    I've gone through the story...Really its a toughest fight with Synovial Sarcoma.

    Could you please suggest me where are you taking the treatment for your Uncle.

    All the best.

    Akshay

    9916706594

  • akshaygupta
    akshaygupta Member Posts: 3
    #74
    sriaadhi said:

    Synovial Sarchoma Survival after surgery and chemo

    Hi all,

    My name is Srini my uncle name is GVMM NAGA RAJU who is suffering with the Cancer deseage called Synovial Sarchoma which primary tumor is localised/located at left lung plura. A brief summary about the Patient's deseage history.

    1. In March 2011 Patient suffered with chest pain and back pain and undergone with some testes reports attached and named as before operation.

    2. Used some Ayurvedic Treatment from April-2011-October 2011 from your institute( Tumer spreads and as per you suggesions we ent for surgery)

    2. In Novener 2011 Patient undergone with surgery and  reports attached and named as post operation discharge summary and also complete Bisopy report attached(we went for Critical surgery and resected with clear margins)

    3.In Decmber 2011 to June 2012 Patient undergone  with Chemo therophy (6 cycles ) and report named as post operation and post chemo discharge sumary

    4.In recent 1st Otober 2012 Patient suffereing with again chest pain and breathihng difficulties and went to Hospital and diagnosed as the tumor re-occured.Report attached as pots operation and post checmo CT scan after 4 months.

    5. Medical oncology doctors team suggested for CT scan , We got CT Scan and found mutiple deposits in and re-occurance of the tumerin the Left luncg uplobe and plueara.

    6. We went for 2nd openion who done the surgery last year, and surgen suggested for us to go with Chemo therophy/pallivated chemotherophy no use of surgery as this is reoccurance and multiple deposits.

    7. Again we went to Medical oncology doctor and hey found new approved medicine called Pazopanib 800mg /400mg. we can test this for few weeks  on prior to move on to pallivated chemothearphy.

    8. We started the Pazopnaib 800 mg for 1st week of November and my uncle(GVMMJN) not able to loerate the side effectes and got sick. we stopped the pazopanib 800 mg for next 10 days and continued with 400 mg for next 2weeks and when ever untolarable we are giving the 1-10 days break and continue with the same 400 mg per day.

    9. We went for CT scan test 3rd week of Jan 2013 and surprising "existing 2 tumers in the left lunng got shrunk(reduced 20-40%) and remianinjg two tumers same size and stable. apart from that a new tumer came in beside to those tumer.

    10. As per Medical oncology doctore new arraaving of the new tumer is a part of this synovial sarchoma and how ever the result is Pazopanib is working and got good ressults.

    11. Medical Oncology Doctor suggsted us to continue with 400 mg per day and till next Scan which is scheduled in the month of April(next 3months after the curret Scan).

    Currently my uncle (GMMMJNR) is tolarable with 400 mg per day per 2 weeks and 1 week break and again 2 weeks. hopefully the way the medicine and deit should manage him to to prevent him from any Sick.

    If any one going for Pazopanib treatment please take the suugeessions fom the concern Medical oncology Doctor on priscription and dosage depends on tolarability of the patient.

    All the best and good luck to every one and keep posting to get immunised our strength to get dying of the cacner and living of the humans.All the best

    Hi Srini..

    I've gone through the story...Really its a toughest fight with Synovial Sarcoma.

    Could you please suggest me where are you taking the treatment for your Uncle.

    All the best.

    Akshay

    9916706594

  • sriaadhi
    sriaadhi Member Posts: 2
    #75
    akshaygupta said:

    Hi Srini..

    I've gone through the story...Really its a toughest fight with Synovial Sarcoma.

    Could you please suggest me where are you taking the treatment for your Uncle.

    All the best.

    Akshay

    9916706594

    Synovial Sarcoma treatment going on with Pazopanib

    HI,

    Curerntly my uncle ongoing treatment with Pazopanib medicine as suggested by NIMS Hyderabad Oncology,

    Treatmet is bit difficult how ever bit better than the Regular chemo , Managing side effectes bit tuffest job and my uncle still capable to handle onlky 400mg per day for -3-4 weeks and then 1 week break and then continues, Tumer agrresive bit downgraded ands till increasing the size of the tumer and getting pains on surrounding liung areas and sholders.

    As per Oncology still continue with Pazopanib medicine.

    You can check with your nearest onclogy and get decide to be hav e a good medicine , normally Synovial sarcoma bit aggressive and it grew very fast and spreads easy via blood vessals.

    Srini

  • t123
    t123 Member Posts: 24
    #76
    akshaygupta said:

    BIPHASIC TUMOR-SYNOVIAL SARCOMA IN RIGHT AXILLA

    Hi All,

    3 years ago my brother was diagnosed for a mass of size 8x5x3 mm in his right axilla and the surgeon removed.Biopsy reports of the mass shown no sign of malignancy.But Now in feb 2013 my brother started complaining of pain in his right axilla while trying to move his arm above head.MRI reports suggests that there is a mass regrown at the same sight,biopsy was taken and tested and the surgical oncologist at Rajeev Gandhi hospital,New Delhi,India is suggesting that it is a "BIPHASIC TUMOR FAVOURING SYNOVIAL SARCOMA".Since then its an emotional trauma for my entire family.

    Now we have refered to ALL India Institue of Medical science.And the surgery date is 22nd April 2013should we wait so long..

    please suggest.

    Regards.

     

     

    I wish you the best.
    I have angiosarcoma and have been in treatment since February 2013. Feel free to email me if you have any questions . I will give you the little hints and clues that may make the treatment easier. Ive gone through the chemo, radiation and surgery.
  • gaby9
    gaby9 Member Posts: 2 Member
    #77
    Synovial sarcoma left lung

    Hello, 

    My name is Gabriela, I am 23 years old and was recently diagnosed with synovial sarcoma.  In December of 2012 I remember telling my family I felt a really strange feeling, when ever I would lay on my left side I would hear a sound like popping bubbles (that's the only way I can explain it) and a weird vibration on the left side of my tummy. I went to the doctor and he gave me a prescription for anti inflammatory pills, he also recommended I do an x ray to see if there was anything else going on. I never went to get that x ray because I thought to myself "Why would I possibly need an x ray". I went back for a follow up and told him I was feeling sharp chest pains and he advised I get that chest x ray.  I finally decided to go to the hospital and A few minutes after my x ray the doctor came out and told me my left lung had completely collapsed. I was then hospitalized for 5 days with a collapsed lung (pneumothorax). During my hospital stay I had numerous tests done (including scans) and the doctors did tell me that I had some old scar tissue near the left side of my lung, but that it was NOTHING to worry about.  

    About two weeks later I went back to the doctor for a follow up visit where I had another chest x ray done. To my surprised my left lung was completely collapsed AGAIN. I was at a loss for words. After much deliberation I decided to go ahead and have surgery to have my lung stapled. 

    I remember waking up after surgery and over hearing the doctor telling my sister they had found a tumor barely attached to the bottom left lung, but he went ahead and removed the tumor. Two weeks later I found out that the 4.3 centermeter tumor was synovial sarcoma and extremely rare. Although the tumor was removed with clear margins, the doctor first recommended I do radiation because of the aggressiveness of the cancer,but After speaking with other doctors he recommended I do 6 rounds of chemo therapy IFEX/adriamycin and mesna and radiation after. I went ahead and started my chemo April 11th and finished my last round July 28th. I started radiation August 26th and will finally be done this upcoming week. 

    Never in a million years did I imagine I would be diagnosed at such a young age with such a nasty aggressive cancer. Although there are days I can't help but wonder if it'll return, I know I did all I could to prevent it. During my chemo I did not stop going to work because all my little kiddies (first graders) helped me keep my mind off everything that was going on. My job was a big part of what helped me keep sane. That and my wonderful family who stood throughout it all. I never let the cancer get the best of me and always kept a smile on my face even though there were days I felt I didn't want to keep going. I hope this is some way helps someone else. 

  • RhondaB1
    RhondaB1 Member Posts: 1
    #78
    montyemae said:

    A CURE for Synovial Sarcoma
    Just read your blog and wanted to share mine with everyone as well www.allthisandmore.typepad.com. I was diagnosed with high grade spindle cell synovial sarcoma in September of 2009. Had two surgeries at the Mayo Clinic in Rochester, MN. The tumor was located in my spine (T-5/T-6) and like many of you they did a major resect on the right side of my back. In April 2010 the cancer spread to my lungs, it looked like a shotgun blast...25-30 nodules. My oncologist said that my chances of long-term survival were very slim, when I asked what his idea of long-term survival was he said five years was considered long term. He said I would probably live 1-2 years, maybe three. We discussed chemo and trial drugs, he said they would only shrink the cancer, then have surgery to remove what they could... but that it would not save my life only prolong it a little. So at the age of 33 with two young girls I was being told I was going to die. Luckily, I had researched and found a doctor in NYC, Dr. Nicholas Gonzalez, that is curing cancer (all cancers). He uses the word manage, but his patients use the word cure. I did have the chance to speak to a handful of his patients, one I spoke to had synovial sarcoma...she has been on the program for 8 years and is doing very well. Dr. Gonzalez uses enzymes to kill of the cancer (along with diet & detox). The program is all natural and does not make you sick like chemo. I am doing GREAT on the program (over 4 months now) feeling better and healthier than ever before, my immune system is very strong and my numbers are dropping (means the cancer is dying off). I beg each of you to read through his website, call his office see if you can get into to be a patient... it may save your life. Dr. Nicholas Gonzalez www.dr-gonzalez.com.

    Wishing you all the best, Montye
    www.allthisandmore.typepad.com
    montyemae@cfl.rr.com

    Also, only a few cancers thrive in an alkaline environment...ours is one of them. If you have synovial sarcoma or any sarcoma I urge you to research the proper diet... I had always read that you needed to be more alkaline if you had cancer. Not true of all cancers, I have learned that we need to be more acid - red meat, chicken, eggs, vinegars, etc...
    Also, another tip - I drink 15oz. of fresh carrot, celery, apple juice twice a day (8oz of that being carrot juice). Get a juicer, eat ONLY organic (no more processed foods), no sugar, no white flour, no soybeans.

    Synovial Sarcoma Diet?

    Hello Montye

    I have come across this post, which I recognise is now pretty old....I hope you are continuing to do well as your post indicates you were back in 2010.  I have only recently been diagnosed with Synovial Sarcoma in my leg.  I am overwhelmed by information on the internet at the moment, ableit it is so hard to know what is realiable and what isnt!  I will be undergoing radiation treatment and surgery soon.  HOwever, I am also very keen to explore complementry things that may assist like dietry changes.  I have looked at the Gonzalez website, but I do not live in the US so actually getting treatment here is very unlikely.  Anyway, I was very interested in your comments that synovial sarcoma patients need to have a diet very different from other cancer patients, ie acid being more important and I wondered if you were able to provide furhter links etc to where I might be able to find out and read more about this?

    thank you, and wishing you the best.

     

  • JennSS
    JennSS Member Posts: 3
    #79
    You are not alone!

    Hello Scarlett: Our minds can work in our benefit or we can

    make it destroy us. It is all up to us. You can read my story

    to know my synovial sarcoma story.

    My advice to you is to have faith and when you get negative thoughts on your mind, switch them 

    with positive thoughts. Also try to keep yourself occupied

    with hobbies that you like. Something that works for me is 

    listening to classical music to relax. If you have a religion,

    prayer is very helpful. We need to practice our faith

    and use our powerful mind to sent positive things to our bodies.

    Keep a positive mind and remember that you are not alone.

     

  • RM1
    RM1 Member Posts: 2
    #80
    jillycb said:

    Synovial Sarcoma & metastases
    Hi to all fellow synovial sarcoma sufferers!

    I was diagnosed in January 2008 with a tumour in the medial thigh. It had been noticeable retrospectively since September 2007 - by way of semi numbness in lower leg - caused by pressure on femoral nerve. No-one knew anything about this cancer until I met my orthopaedic surgeon who said if I was lucky he would save my leg!

    Radiotherapy to reduce tumour. 5 hour operation to remove tumour & do a vascular resection as it was wrapped around the femoral nerve, artery & vein. I now have what I call my city bypass! Tumour was 90% dead from radiation & was removed with negative margins.

    The chemo question came up, and although it was onbly a 2.3% likely hood of reducing chance of metsatases, I did it, but had to wait 5 months as my wound had not healed in my leg. It was a Doxirubicin/Isofosfamide combo. I managed 4 cycles, each 4-5 days in hospital.

    3 month checks from then on. In February 2010, just when I was getting cocky, a single metastase showed in lower right lobe of lung. They checked the rest of me, it all showed clear, so we removed that lobe in March 2010.

    All looked OK again......

    Now - we have 2 metastases in lower left lobe of lung, and one that is in the pleural cavity beneath where the right lung now finishes! My oncologist seems to think there are probably many more just dying to grow and be seen! Thanks a lot.

    The one in the pleural cavity is now growing.........We will probably have a go at standard radiation for that one, but what to do with the others......

    I see there are options in some places for Brachytherapy for Lung Metastases, and that seems like a very sensible approach - focussed radiotherapy. Does anyone know where they do this?

    Chemotherapy (Doxirubicin) apparently has a 25% chance of reducing metastic tumours, and there is another drug, not readily avalable that has a 20% chance of metastic tumour size reduction. This is not a cure I understand, just a management tool.

    How to keep positive when you have no idea what's going to happen next?

    I eat Apricot Kernels that I crack myself, I take Percy's Powder, lots of vitamins, Barley Grass Powder with fruit juices and yoghurt, and I work hard to keep my mind off all those nasty statistics you find on the Internet.

    I live in New Zealand. If anyone can direct me with regard to Brachytherapy or any other potential solutions to lung metastases or what medical establishments can offer the best advice/research, then I am sure we could all benefit from the information.

    With such a rare cancer, we need to pool our information to maximise the options and solutions that might work for some of us.

    Remember the Placebo effect - the power of the mind CAN make a difference, which means you need to be positive, and divert yourself from the anxiety that affects us all pre-visit time....

    I have the same story as you

    Hi jillycb and All,

    Hope you are doing well. My daughter has the same issies as you.  My daughter was diagnised with SS in 2007.  last year se had AKA of her left leg.  We recently learned that the tumor has recurred into her lungs.  We dont know what next steps are and what the fouture would be.  Any help or advise would be very helpful.

    RM

  • RM1
    RM1 Member Posts: 2
    #81
    gaby9 said:

    Synovial sarcoma left lung

    Hello, 

    My name is Gabriela, I am 23 years old and was recently diagnosed with synovial sarcoma.  In December of 2012 I remember telling my family I felt a really strange feeling, when ever I would lay on my left side I would hear a sound like popping bubbles (that's the only way I can explain it) and a weird vibration on the left side of my tummy. I went to the doctor and he gave me a prescription for anti inflammatory pills, he also recommended I do an x ray to see if there was anything else going on. I never went to get that x ray because I thought to myself "Why would I possibly need an x ray". I went back for a follow up and told him I was feeling sharp chest pains and he advised I get that chest x ray.  I finally decided to go to the hospital and A few minutes after my x ray the doctor came out and told me my left lung had completely collapsed. I was then hospitalized for 5 days with a collapsed lung (pneumothorax). During my hospital stay I had numerous tests done (including scans) and the doctors did tell me that I had some old scar tissue near the left side of my lung, but that it was NOTHING to worry about.  

    About two weeks later I went back to the doctor for a follow up visit where I had another chest x ray done. To my surprised my left lung was completely collapsed AGAIN. I was at a loss for words. After much deliberation I decided to go ahead and have surgery to have my lung stapled. 

    I remember waking up after surgery and over hearing the doctor telling my sister they had found a tumor barely attached to the bottom left lung, but he went ahead and removed the tumor. Two weeks later I found out that the 4.3 centermeter tumor was synovial sarcoma and extremely rare. Although the tumor was removed with clear margins, the doctor first recommended I do radiation because of the aggressiveness of the cancer,but After speaking with other doctors he recommended I do 6 rounds of chemo therapy IFEX/adriamycin and mesna and radiation after. I went ahead and started my chemo April 11th and finished my last round July 28th. I started radiation August 26th and will finally be done this upcoming week. 

    Never in a million years did I imagine I would be diagnosed at such a young age with such a nasty aggressive cancer. Although there are days I can't help but wonder if it'll return, I know I did all I could to prevent it. During my chemo I did not stop going to work because all my little kiddies (first graders) helped me keep my mind off everything that was going on. My job was a big part of what helped me keep sane. That and my wonderful family who stood throughout it all. I never let the cancer get the best of me and always kept a smile on my face even though there were days I felt I didn't want to keep going. I hope this is some way helps someone else. 

    Hi Gaby9

    Hi gaby, hope you are doing well.  My daughter has been under the same situation as you.  She is 17 years old and her SS had gone to her lungs.  Dont loose faith.  Good things do happen.

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