Synovial Sarcoma survivors wanted! Would love to hear stories!

245

Comments

  • lilfrannie
    lilfrannie Member Posts: 4
    ljgetfit said:

    I can Relate
    Hello everyone,
    I'd like to share my story as it relates to all of yours.

    On Feb 14th, 2002 I was diagnosed with a synovial sarcoma in my right chest wall, I was 19.
    Stepping back years sooner, I had always had a pinch of pain when ever I'd stretch the wrong way or inhale too deeply, it was strange, but never thought anything of it till I noticed a large raised area on my back. (right under my right shoulder blade.) I then went to the doctor and he was unsure of what it might be. I went to a chiropractor (he made me cry in so much pain), and that didn't help.
    Finally after going to many doctors, they decided to remove the tumor (not knowing it was cancer yet). After the surgery (beginning of Feb.), they called me to tell me what I had. I was so scared. I cried for days, not knowing what was going to happen. I was then told that I needed another surgery to make sure all the margins were removed as well. My parents decided the best thing for me was to have surgery at MSKCC in NY. After surgery I had ten days of awful recovery, I didn't think I'd ever be able to breath again. I remember my doctor coming in and telling me that they had to remove 3 of my ribs and a lot of muscular tissue as well, and my lung had collapsed during surgery due to the tumor being so close to my lung. I remember being so sleepy for days and my family just sat by my side- I love them for that. It took a lot of time for me to recover from the surgeries, but when I did I received radiation therapy. I'd have to say this was the worst part. I lived in Wilton, CT and drove to Greenwich everyday for at least 3 months. The radiation made me so nauseous, the ride in the car seemed to last for ever.

    After all the surgeries and radiation I was free. I still go back and see my Oncologist every 6 months, have regular MRIs and CT scans, but im living in remission and hopes of staying. I feel great, but having cancer was a wake up call for me. I live day to day now and take everyday for what its worth.

    synovial sarcoma chest wall
    Hello. I was surprised to read your story. It sounds so much like mine. I am a 45yr old mother of 3 teenagers. 4 months ago,I was diagnosed with synovial sarcoma on my left chest wall. I underwent brutal chemotherapy and radiation before surgery. Thankfully, the chemo killed 80% of the cancer cells within the tumor, and the radiation shrunk the tumor by 30%. 4 weeks ago, I underwent the surgery to remove the tumor. I also had 3 ribs removed, my entire pectoralis minor muscle, and 1/4 inch of lung. They were able to remove the entire tumor with clean margins. My doctors and I are now discussing whether or not I should have 2 more cycles of chemo. I am afraid either way and I am not sure what to do. This whole ordeal has taken such a toll on me physically and mentally. Now I am afraid of a recurrence or a secondary cancer from all the chemo. Because this is such a rare cancer, I have not had the opportunity to meet or speak to anyone else who has had a similar experience. Thank you for posting your story. I don't feel so alone anymore.
  • ForL0ve
    ForL0ve Member Posts: 1
    Not a survivor yet...
    Hi Scarlett,

    I stumbled across your post as I was researching on what SS was. I'm not a survivor YET...I actually don't even know too much about it besides the fact that it's really rare. I was diagnosed a month ago and everything seems a little surreal. The majority of articles I've read had said that the prognosis was not good but stumbling across this forum gave me some sort of hope.

    There's been a lot going through my head and many questions have not been answered yet. I have not gotten a PET or MRI yet but hopefully the new oncologist I'm seeing in a few days will be better (he'll be the 3rd one I see)! The experience is a little tough and I've started blogging about it in hopes to find others who are going through the same thing or have gone through it...this is the site: http://forl0ve.tumblr.com
  • montyemae
    montyemae Member Posts: 1
    ForL0ve said:

    Not a survivor yet...
    Hi Scarlett,

    I stumbled across your post as I was researching on what SS was. I'm not a survivor YET...I actually don't even know too much about it besides the fact that it's really rare. I was diagnosed a month ago and everything seems a little surreal. The majority of articles I've read had said that the prognosis was not good but stumbling across this forum gave me some sort of hope.

    There's been a lot going through my head and many questions have not been answered yet. I have not gotten a PET or MRI yet but hopefully the new oncologist I'm seeing in a few days will be better (he'll be the 3rd one I see)! The experience is a little tough and I've started blogging about it in hopes to find others who are going through the same thing or have gone through it...this is the site: http://forl0ve.tumblr.com

    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.
  • btill48162
    btill48162 Member Posts: 5
    14 year Survivor
    I am currently 24 years old. I was diagnosed with Synovial Cell Sarcoma in 1995, I was 9 at the time. I actually had my port inserted, some tissue removed from my lung and began chemo on December 17, 1995, my 10th birthday. Sucky, I know! My mom has stated numerous times that she thought the chemo was going to kill me before the cancer did. I was diagnosed when it was very rare so they had to do experimental doses of chemo on me. I don't remember the size but it was located in my left forearm. I will have to say that even 14 years later, I still have anxiety about it. Any little knot or lump I feel I run to the doctor. What can you expect? Only to find out that there is nothing wrong. I still follow up with an oncologist once a year and will for the rest of my life. I was the same way when I would do my chemo. I would go in for a 72 hour drip, usually around the weekend, and wouldn't know where I was half the time. Honestly, that was probably the blankest time of my life. I stayed so out of it and sick from the chemo. I still get very emotional to talk about what I went through and I am sure I always will. I know, that today, I am the woman I have become because of the cancer. You will always have anxiety and will always be scared but that's natural. You are the one who had to suffer through this terrible disease. Just stay strong and start working towards the positive, instead of dwelling on the negative.
  • jilanroy said:

    23 Year Survivor
    Dear Scarlett,

    In August 1986 when I was 20 yrs old, I was diagnosed with synovial cell sarcoma in my foot. The bad news is that my foot was amputated - but the good news is that 23 yrs later I am here - healthy, married, two children (ages 15 & 13).

    It is very tough to stay positive, but staying positive is your lifeline. Surround yourself with strong people.

    Respond back if you'd like more info - I will be glad to give you my contact info.

    Best, Jane

    Going on 23 years too!
    Hi Jane ~

    Your story related the most to me and mine. In February of 1988 I had just turned 14 and was diagnosed with cancer from a tumor in my foot. Talk about a shock to the system and a young girl's self esteem!

    I also am an amputee and did not have to have radiation or chemotherapy (Thank God!) I am a mother of a 10 yr old boy and step-mom to a 15 yr old boy & 12 yr old boy. I am thankful for the life I have been able to lead and grateful for all the people who I have loved and lost along the way.

    Life always goes on, it just gets shaped by how we live it! Don't get me wrong, I know dark days and hung out way too long in some of them, but I really believe that there is always hope.

    I am curious as to what follow-up you do if any all these years out. My doctors told me that I should get a chest xray every other year for the rest of my life, which I have done. What did they tell you? It would be great to talk to another woman that has been thru this. I look forward to hearing from you!

    Your sister in survival,
    Rhonda
  • traviso
    traviso Member Posts: 1
    6+ Year Survivor
    In May 2004 I was diagnosed with Stage 3 Synovial Sarcoma in my right elbow at the age of 32. The big milestone for me was to hit my 5 year mark, which I did last year. My diagnosis came after years of doctors missing what my lump really was, several doctors treated me for 'tennis elbow'.

    There are so many decisions and plans to make right after a diagnosis, but before I was mentally prepared for my treatment I was smack in the middle of my 1st round of high dose chemo (ifosfamide/doxorubicin/mesna). Chemo. Wow, what a smack that was too. It kicked my butt. Nobody can properly prepare you for this barbaric treatment. After the first day, you slip away to this 'place'. It's hard to describe, but anyone that goes through it knows what I am talking about. You can hear, but not answer. You can see, but not fully absorb. You ache, it hurts, you wish you could die you feel like you have. I was paroled from chemo treatment on 9/13/04. Radiation treatment ended shortly thereafter. I was given my life back just in time for my daughters first birthday.

    Here is my advice to others that may just be starting their fight. Ask your doctor questions,a lot of them, get all the information you can. If you're a guy, preserve your ability to have children - chemo can take that away. Surround yourself by people who love you and who give you the positive words of encouragement you need. Prepare yourself for chemo, it's going to be tough and you will lose your life as you know it for awhile. My advice to friends and family is simple. Be there. Be available. Hold them when they get sick. Remember that we feel a need to make you feel better about all of this too.

    Sitting here reading these almost 7 years later is tough. But there are a lot of survival stories out there!
  • twinsmom2
    twinsmom2 Member Posts: 1
    Surviving after 23 years
    I was diagnosed with synovial sarcoma when I was a teen 23 years ago. I received 18 months of the worst chemo possible. It did not work, so I ended up receiving radiation. Did not work either. Right after I turned 18, I had to have my right leg amputated, just below the knee. Did not receive any other sort of treatment after the fact. I was told that it could still come back and that because ogf the extreme chemo and radio that I could not have any kids. I am glad to say that I am the proud mom of 16 year old twin girls who are beatiful and healthy. Cancer has not come back (thanks Lord). I live my .life as normal as I can, married for 20 years now. No signs of cancer.
  • BoilerStrong
    BoilerStrong Member Posts: 2
    traviso said:

    6+ Year Survivor
    In May 2004 I was diagnosed with Stage 3 Synovial Sarcoma in my right elbow at the age of 32. The big milestone for me was to hit my 5 year mark, which I did last year. My diagnosis came after years of doctors missing what my lump really was, several doctors treated me for 'tennis elbow'.

    There are so many decisions and plans to make right after a diagnosis, but before I was mentally prepared for my treatment I was smack in the middle of my 1st round of high dose chemo (ifosfamide/doxorubicin/mesna). Chemo. Wow, what a smack that was too. It kicked my butt. Nobody can properly prepare you for this barbaric treatment. After the first day, you slip away to this 'place'. It's hard to describe, but anyone that goes through it knows what I am talking about. You can hear, but not answer. You can see, but not fully absorb. You ache, it hurts, you wish you could die you feel like you have. I was paroled from chemo treatment on 9/13/04. Radiation treatment ended shortly thereafter. I was given my life back just in time for my daughters first birthday.

    Here is my advice to others that may just be starting their fight. Ask your doctor questions,a lot of them, get all the information you can. If you're a guy, preserve your ability to have children - chemo can take that away. Surround yourself by people who love you and who give you the positive words of encouragement you need. Prepare yourself for chemo, it's going to be tough and you will lose your life as you know it for awhile. My advice to friends and family is simple. Be there. Be available. Hold them when they get sick. Remember that we feel a need to make you feel better about all of this too.

    Sitting here reading these almost 7 years later is tough. But there are a lot of survival stories out there!

    6+ year survivor
    I, too, was diagnosed with synovial sarcoma in May of 2004 and it took me all this time to get back to sites like this and read of other survivors' stories. I only had chemotherapy, no radiation. I was cancer-free for 3 years before it showed up in my right lung. Fast forward a few years and now I'm looking at my 4th surgery. After my first lung surgery, I swore I would never do that again.....well, these are the things you do when you have a wonderful husband and three amazing children. I decided to find others who have similar stories with synovial sarcoma in hopes of finding that support group who really understands just what we go through on a daily basis. Keep the faith, and God bless everyone.
  • monster123
    monster123 Member Posts: 2
    my name is susan not monster that was only the disease
    Dear Scarlett,
    I read your story and it made me cry!
    My husband ended up with a grade 3 soft tissue sarcoma approx. 22 cm after being misdiagnosid by a goofball.
    I understand your aniexty , i understand everything you r going through but let me say this it sounds like you have faith and so do we and that is what will get u through this.
    melvin, my husband had a partial amp but is now commuting and working again.
    you can email me at latenightcoffe@yahoo.com if you need to talk
    I will be praying for you

    Susan Carter
  • amani
    amani Member Posts: 3
    19 yr survivor...inshAllah
    I was 21yo when I was told I had a benign tumor in my left forearm to find out it was a malignant synovial sarcoma. I had a biopsy and 5 surgeries. I received radiation txs n MRIs. I stayed in the hospital for a total of 11 months. During that time my muscle was removed. I was told that if the cancer could not be removed that my left arm would be amputated above my elbow. Thank God that didn't happen!
    For the past 7 months I've had another knot on my right forearm and was scared to go get it checked out. I never associated my anxiety with my diagnoses til now.
    I had a biopsy Feb. 19 and I still haven't received my results. It was sent for a second opinion. So now I'm waiting...again. It's been 19 yrs! I'm 40yo with 3 boys, daughter in law, and 2 grandkids. It's scary but I know God will take care of me and my family.
    It was a blessing to see your comment because I never talk to anybody about what happened. Nobody REALLY knew what I felt or went through. And to hear ALL of the stories that sound so familiar...I dont feel so alone anymore ;)...THANK YOU.
  • amani
    amani Member Posts: 3
    19 yr survivor...inshAllah
    I was 21yo when I was told I had a benign tumor in my left forearm to find out it was a malignant synovial sarcoma. I had a biopsy and 5 surgeries. I received radiation txs n MRIs. I stayed in the hospital for a total of 11 months. During that time my muscle was removed. I was told that if the cancer could not be removed that my left arm would be amputated above my elbow. Thank God that didn't happen!
    For the past 7 months I've had another knot on my right forearm and was scared to go get it checked out. I never associated my anxiety with my diagnoses til now.
    I had a biopsy Feb. 19 and I still haven't received my results. It was sent for a second opinion. So now I'm waiting...again. It's been 19 yrs! I'm 40yo with 3 boys, daughter in law, and 2 grandkids. It's scary but I know God will take care of me and my family.
    It was a blessing to see your comment because I never talk to anybody about what happened. Nobody REALLY knew what I felt or went through. And to hear ALL of the stories that sound so familiar...I dont feel so alone anymore ;)...THANK YOU.
  • amani
    amani Member Posts: 3
    oops! correction
    I said I had my biopsy on Feb. 19. Ooops! I meant Jan. 19. Im sure you knew what I meant. I felt this overwhelming need to correct it...OCD, huh? LOL
  • wander
    wander Member Posts: 1
    28 Year Survivor of Synovial Cell Sarcoma
    Even after 28 years, I still have times of anxiety. I have accepted this as part of life, and remind myself everyday how lucky we are to be here each day. Don't forget to live life to the fullest each moment.

    My tumor was at the base of my skull, involving surrounding nodes and muscle. I underwent a radical neck disection, and radiation treatments.
  • pandorassarcoma
    pandorassarcoma Member Posts: 1
    Also not yet...
    I just read through everyone's replies and I have to say I am much uplifted. I was 26 at diagnosis...I was diagnosed 3 years ago with a very large tumour on my left thigh. They did 6 weeks of radiation therapy and then surgery. Up until Oct of 2010, I was in remission. And then I wasn't...

    It came back in my left pelvic area and my right lung. We started chemo Nov 8th, Adriamycin and ifosfamide; 21 day cycles... my last treatment was last week. I would go into the hospital Monday, treatment Mon and Tues, then sick as a dog the rest of the week.

    But after the first 2 treatments, we saw a reduction of nearly 50% in both tumours!! Very exciting! After the next 2 treatments, further shrinkage, but not nearly so dramatic. And now I am waiting for my next scan to see what happened in the last 2 treatments.

    The doctor's have been playing "let's wait and see" with my time, but I trust them. I am young and in pretty good health otherwise. I can't see why we should fail.
  • scaredlou
    scaredlou Member Posts: 1

    Also not yet...
    I just read through everyone's replies and I have to say I am much uplifted. I was 26 at diagnosis...I was diagnosed 3 years ago with a very large tumour on my left thigh. They did 6 weeks of radiation therapy and then surgery. Up until Oct of 2010, I was in remission. And then I wasn't...

    It came back in my left pelvic area and my right lung. We started chemo Nov 8th, Adriamycin and ifosfamide; 21 day cycles... my last treatment was last week. I would go into the hospital Monday, treatment Mon and Tues, then sick as a dog the rest of the week.

    But after the first 2 treatments, we saw a reduction of nearly 50% in both tumours!! Very exciting! After the next 2 treatments, further shrinkage, but not nearly so dramatic. And now I am waiting for my next scan to see what happened in the last 2 treatments.

    The doctor's have been playing "let's wait and see" with my time, but I trust them. I am young and in pretty good health otherwise. I can't see why we should fail.

    this one is for pandorassarcoma
    hi,hope you are going well with the treatment ,your case seems to be the closest to mine i can find on any blogs.
    i am 31 years old with two young kids.I was diagnosied 2 days before xmas 2010 with synovial sarcoma in my right thigh large tumor.i have done 5 weeks raddiation and am about to have surgery then i am having 6 cycles of chemo.
    i am so glad to see your tumors are reducing.how are you felling now?you stay strong and i will be thinking of you.
  • survivor7
    survivor7 Member Posts: 6
    Synovial Sarcoma
    Get to the GERSON CLinic in San Diego and then get to FRance. My son fought for 7 years. Had Chemo and Radiaation this does not work. Had surgeries amputation, Maps , Antibody vaccines.



    Dear Dr. Fukukawa:
    Thank you so much for your prompt response. I am so happy to hear that the new trials will begin in July. I am sure you will have great success with this Frizzle gene and I am very excited for the future cure of sarcomas. I would like my son to be considered for this trial. Presently we are considering laser surgery in Germany by Dr. Rolle. We are hoping to buy him some time until the cure comes on the market. My prayers will be with you and your research. I would be very interested to hear more about the trials and the needed qualifying requirements to enter into the trial. God bless you and Merry Christmas!

    Sincerely,

    Ana Wolber
    Happynina7@hotmail.com
    1-631-331-0979 home
    1-631-848=3003



    --------------------------------------------------------------------------------
    Subject:
    Date: Wed, 22 Dec 2010 14:25:28 +0900
    From: c-fukukawa@oncotherapy.co.jp
    To: happynina7@hotmail.com
    CC: hhanaoka@med.gunma-u.ac.jp
  • survivor7
    survivor7 Member Posts: 6
    scaredlou said:

    this one is for pandorassarcoma
    hi,hope you are going well with the treatment ,your case seems to be the closest to mine i can find on any blogs.
    i am 31 years old with two young kids.I was diagnosied 2 days before xmas 2010 with synovial sarcoma in my right thigh large tumor.i have done 5 weeks raddiation and am about to have surgery then i am having 6 cycles of chemo.
    i am so glad to see your tumors are reducing.how are you felling now?you stay strong and i will be thinking of you.

    Son had Synovial.
    My son just past away after fighting a brave battle. I tell you chemo and radiation don't work. He had both. 35 rounds of radiation and 7 rounds chemo. Various surgeries, MAPS a vaccine made from his tumor. Your best bet GERSON institute in San Diego and then France. My prayers are with you. Faith is vital. God Bless you and check out Supportthekid.com.


    Dear Dr. Fukukawa:
    Thank you so much for your prompt response. I am so happy to hear that the new trials will begin in July. I am sure you will have great success with this Frizzle gene and I am very excited for the future cure of sarcomas. I would like my son to be considered for this trial. Presently we are considering laser surgery in Germany by Dr. Rolle. We are hoping to buy him some time until the cure comes on the market. My prayers will be with you and your research. I would be very interested to hear more about the trials and the needed qualifying requirements to enter into the trial. God bless you and Merry Christmas!

    Sincerely,

    Ana Wolber
    Happynina7@hotmail.com
    1-631-331-0979 home




    --------------------------------------------------------------------------------
    Subject:
    Date: Wed, 22 Dec 2010 14:25:28 +0900
    From: c-fukukawa@oncotherapy.co.jp
    To: happynina7@hotmail.com
    CC: hhanaoka@med.gunma-u.ac.jp
  • survivor7
    survivor7 Member Posts: 6
    Jessg1011 said:

    6 Months and Hopefully More
    Hi,

    So i am happy to see so many people doing good. It makes me feel hopeful. I am 24 years old and I live in Rhode Island.

    In 2005 I Began to feel pain in my left forearm that would not go away. i thought it was carpyl tunnel. Was I wrong. So i went for an xray and they ended up xraying the wrong part of my arm. So they said they saw nothing. as the years went by i just learned to cope with the pain saying to myself well i aleady had it checked out and they saw nothing. Well in september of 2009 (yeah a long time after) I was washing dishes and my hand locked up and i dropped my dishes. I went to an urgent care the next day. I told the doctor my symptoms and issues he says that doesn't sound right let me take an xray just to make sure its not a tumor but it sound just like tendenitis. It turned out it was a tumor. They first thought it was a bone tumor I then got an mri and they thought it was a nerve sheath tumor. Then i was sent for a needle biopsy at rih. I waited a month for the results once they came back they told me it was a synovial sarcoma tumor.

    I met with 4 different surgeons until an orthopedic surgeon at rih took my case. (thank god). I underwent surgery in November of 2009 and it was over a 4 hour surgery. My tumor was odd they said since most are ball shaped and you can feel them or see them through a visible eye. mine you could not see nore feel it went with the lenght of my arm. I now have a scar from my wrist to the middle of my bicep. I spend 9 days in the hospital receiving local radiation 3 times a day. They inserted tubes to put the radiation in my arm, it was in a form of a cast during my duration. Let me stress how painful it was!!!

    All of the doctors and surgeons that were either in the room or that were student residents all told me how fascinated they were with my surgery since the tumor was wrapped in around my bones, nerves, veins, and tissue. Even oncology was shocked.

    Since surgery I am still not able to work I have alot of median nerve damage. Its weird to me since the time has passed movement in my arm has gotten better i feel but i have lost feeling in my thumb, pointer and middle finger and down in my left hand. Oh and I am a lefty!

    I have had mri's, ct's, and xrays periodically since while still meeting with oncology, chemo, and my surgeon. After meeting with the tumor board they feel right now chemo would not benefit me nor help me out. What has been tested is clean righ now I am releived.

    I am still very fatigue and have even tried to change how I eat. This has been an extremely difficult situation for me to handle I have a 3 year old son and a husband. I now have alot of anxiety, and depression and my goodness fear of my next doctors appointment. I also always try to hide my arm now in fear of people seein such a huge scar.

    Jessica

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    Son lost battle after many years. Chemo and radiation don't work. He had 7 rounds and 35 rounds radiation. Various surgeries. Amputation. Vaccines made from his tumors. MAPS. Best bet is get to GERSON institute in San Diego and then France.Check out Supportthekid.com


    Dear Dr. Fukukawa:
    Thank you so much for your prompt response. I am so happy to hear that the new trials will begin in July. I am sure you will have great success with this Frizzle gene and I am very excited for the future cure of sarcomas. I would like my son to be considered for this trial. Presently we are considering laser surgery in Germany by Dr. Rolle. We are hoping to buy him some time until the cure comes on the market. My prayers will be with you and your research. I would be very interested to hear more about the trials and the needed qualifying requirements to enter into the trial. God bless you and Merry Christmas!

    Sincerely,

    Ana Wolber
    Happynina7@hotmail.com
    1-631-331-0979 home



    --------------------------------------------------------------------------------
    Subject:
    Date: Wed, 22 Dec 2010 14:25:28 +0900
    From: c-fukukawa@oncotherapy.co.jp
    To: happynina7@hotmail.com
    CC: hhanaoka@med.gunma-u.ac.jp
  • survivor7
    survivor7 Member Posts: 6
    ljgetfit said:

    I can Relate
    Hello everyone,
    I'd like to share my story as it relates to all of yours.

    On Feb 14th, 2002 I was diagnosed with a synovial sarcoma in my right chest wall, I was 19.
    Stepping back years sooner, I had always had a pinch of pain when ever I'd stretch the wrong way or inhale too deeply, it was strange, but never thought anything of it till I noticed a large raised area on my back. (right under my right shoulder blade.) I then went to the doctor and he was unsure of what it might be. I went to a chiropractor (he made me cry in so much pain), and that didn't help.
    Finally after going to many doctors, they decided to remove the tumor (not knowing it was cancer yet). After the surgery (beginning of Feb.), they called me to tell me what I had. I was so scared. I cried for days, not knowing what was going to happen. I was then told that I needed another surgery to make sure all the margins were removed as well. My parents decided the best thing for me was to have surgery at MSKCC in NY. After surgery I had ten days of awful recovery, I didn't think I'd ever be able to breath again. I remember my doctor coming in and telling me that they had to remove 3 of my ribs and a lot of muscular tissue as well, and my lung had collapsed during surgery due to the tumor being so close to my lung. I remember being so sleepy for days and my family just sat by my side- I love them for that. It took a lot of time for me to recover from the surgeries, but when I did I received radiation therapy. I'd have to say this was the worst part. I lived in Wilton, CT and drove to Greenwich everyday for at least 3 months. The radiation made me so nauseous, the ride in the car seemed to last for ever.

    After all the surgeries and radiation I was free. I still go back and see my Oncologist every 6 months, have regular MRIs and CT scans, but im living in remission and hopes of staying. I feel great, but having cancer was a wake up call for me. I live day to day now and take everyday for what its worth.

    Synovial Sarcoma
    I am so Happy you are cancer free. My son passed away after many years. I suggest you go to the Gerson Institute in San Diego to stay cancer free. and there is a FRizzle gene in France that has killed the synovial in mice. It will come out this July. God Bless you!
    Supportthekid.com is the foundation my son started.

    Dear Dr. Fukukawa:
    Thank you so much for your prompt response. I am so happy to hear that the new trials will begin in July. I am sure you will have great success with this Frizzle gene and I am very excited for the future cure of sarcomas. I would like my son to be considered for this trial. Presently we are considering laser surgery in Germany by Dr. Rolle. We are hoping to buy him some time until the cure comes on the market. My prayers will be with you and your research. I would be very interested to hear more about the trials and the needed qualifying requirements to enter into the trial. God bless you and Merry Christmas!

    Sincerely,

    Ana Wolber
    Happynina7@hotmail.com





    --------------------------------------------------------------------------------
    Subject:
    Date: Wed, 22 Dec 2010 14:25:28 +0900
    From: c-fukukawa@oncotherapy.co.jp
    To: happynina7@hotmail.com
    CC: hhanaoka@med.gunma-u.ac.jp
  • survivor7
    survivor7 Member Posts: 6
    Son had Synovial
    Get to the Gerson Institute in San Diego. Also this Dr. in France has a new drug that has killed Synovial in mice.God Bless You




    Dear Dr. Fukukawa:
    Thank you so much for your prompt response. I am so happy to hear that the new trials will begin in July. I am sure you will have great success with this Frizzle gene and I am very excited for the future cure of sarcomas. I would like my son to be considered for this trial. Presently we are considering laser surgery in Germany by Dr. Rolle. We are hoping to buy him some time until the cure comes on the market. My prayers will be with you and your research. I would be very interested to hear more about the trials and the needed qualifying requirements to enter into the trial. God bless you and Merry Christmas!

    Sincerely,

    Ana Wolber
    Happynina7@hotmail.com




    --------------------------------------------------------------------------------
    Subject:
    Date: Wed, 22 Dec 2010 14:25:28 +0900
    From: c-fukukawa@oncotherapy.co.jp
    To: happynina7@hotmail.com
    CC: hhanaoka@med.gunma-u.ac.jp

    Diego. Also cure coming in July in FRance.