LONG TERM SARCOMA SURVIVORS WANTED

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  • CTPatient
    CTPatient Member Posts: 2
    #22
    rc dobbs said:

    Rhabdomyosarcoma survivor
    I think I qualify as a long-term survivor, 35 years this month. There have been ups and downs during that 35 years due to the aftermath of the cancer but when given a 5% chance of survival at the original diagnosis, I guess life has been pretty good. Diagnosed at the age of 22, I am getting ready to celebrate my 58th birthday Saturday.

    That is great! Please Post the Good News so others can get throu
    Happy birthday!!!! Survivors and families, please post all the good news we can get. My boyfriend if fighting his second tumor and sometimes we just feel so hopeless. I want motivate him but get so drainned with the bad news all the time. It is great to read about good turn outs. God bless everyone
  • Yasidasi
    Yasidasi Member Posts: 3 Member
    #23
    ali_beth said:

    I'm almost to my 5 yr.
    I'm almost to my 5 yr. remission mark. I am a survivor of osteo genic sarcoma. I had it 5 times.

    my brother age 15 just diagnosed with osteosarcoma
    Did you need to have a limb salvage surgery or amputation? My e-mail is ydrummond@gmail.com

    thanks!
  • LivingStrong
    LivingStrong Member Posts: 1
    #24
    ronny said:

    metasis to lungs
    Hi, After my first treatment in 1999, the Ewings came back in my lungs in 2003. I had chemo and surgery to remove the spots on my lungs. On the ct scan it showed 8 spots, during surgery they found only 3. 2 were dead from chemo and there was 1 live by my heart. Then in 2006 it returned again the chemo no longer worked. My Dr. in MI sent me to San Antonio to meet with Dr. Anthony Tolcher about starting a new clinical trial called amg 479. I had some lympe nodes involved and spots on the lungs. They started treatment and in 8 days the tumors shrank by 60%. After 8 weeks the pet scan went silent. I still fly to Texas every 3 weeks and get the drug. It is given in my port and has had no major sideeffects. It is a human monocolonal antibody therapy and just attacks the cancer cells. I have been on it since Dec. of 06.
    Ron

    monoclonal antibody therapy
    Hi. My 14 year old son was diagnosed with Ewings this January. He went through chemo and radiation protocol. Had some pulmonary nodules, but they weren't positive they were mets. I am interested in your surgeon, the treatment you were on for recurrence, and especially this clinical trial called amg479. My husband is a cancer survivor, and had Rituxan, a monoclonal antibody for non-Hodgkins Lymphoma. I wasn't aware there was one for Ewings. Please write back.

    Thank you!
  • mwetter1954
    mwetter1954 Member Posts: 7
    #25
    Endometrial Stromal Sarcoma
    I was diagnosed with ESS on Oct. 16, 2000. It's been almost 9 years!!! I was treated for 5 years with the drug Megace and as of my last CT scan, July 28, 2009, I remain cancer free!
  • dlrobins
    dlrobins Member Posts: 17
    #26
    Riesbrian7 said:

    Rhabdomyosarcoma Survivor for approximately 24 years
    Didn't see any with this one posted yet, but I'm right around 24 years since I was diagnosed. The rhabdomyosarcoma was located in the back of my head. Keep the chin up, the best advise I can give is not to give up. Everyone knows the sarcomas are bad to have, but attitude helps a lot. I was between the ages 7-8 when I came down with it. My parents did not have the heart to tell me I was terminal. I truly believe that if I had known what the doctors said, I probably would not have made it. Attitude is a lot in the fight, you can not give up. I'm 31 and can say I survived when I was terminal and wasn't going to make it a year. I hope this gives encouragement to you and any others that read this. Good luck with your battle and same to everyone else.

    Brian Ries

    Battle with rhabdomyo
    Brian, Thank you so much for posting your winninng battle with rhabdo. My son kyle is 21, and just beginning the fight. He was diagnosed in July 09, and has been through 2 sessions of vac with little success. He will soon begin a more aggressive chemo regiment, and we are positive we will see this tumor shrink. Kyle's tumor is in his neck. Thank you for positive outlook... we know that kyle will make it through this. Lots of love and luck with continued good health. Debbie Robinson
  • dlrobins
    dlrobins Member Posts: 17
    #27
    rc dobbs said:

    Rhabdomyosarcoma survivor
    I think I qualify as a long-term survivor, 35 years this month. There have been ups and downs during that 35 years due to the aftermath of the cancer but when given a 5% chance of survival at the original diagnosis, I guess life has been pretty good. Diagnosed at the age of 22, I am getting ready to celebrate my 58th birthday Saturday.

    rhabdomyosarcoma survivor
    rc, I am so thankful that I logged on to this today... my son kyle age 21 was recently diagnosed with rhabdo. This is such an aggressive cancer, and it literally shakes your world. We have all the faith in the world, that kyle will make it through this battle, and just reading about your survival makes us even more stronger in our belief. Thank you so much! Debbie
  • dlrobins
    dlrobins Member Posts: 17
    #28
    rc dobbs said:

    Rhabdomyosarcoma survivor
    I think I qualify as a long-term survivor, 35 years this month. There have been ups and downs during that 35 years due to the aftermath of the cancer but when given a 5% chance of survival at the original diagnosis, I guess life has been pretty good. Diagnosed at the age of 22, I am getting ready to celebrate my 58th birthday Saturday.

    survivor
    RC... Thank you...People like you continue to give hope everyday. My son Kyle 21 is fighting the RMS battle, and is determined to come out a winner. Thank you for your words of inspiration. Wishing you continued good health and happiness. Debbie R.
  • rhenry3
    rhenry3 Member Posts: 8
    #29
    Undifferentiated Sarcoma
    I was glad to see some long-term survivors of Rhabdomyosarcoma. While my son's diagnosis is non-rhabdo it is similar and treated the same. He is 7 yrs old and was dx in Feb. 09 with an 11 cm mass in the middle of his liver. He recd 6 rounds of doxorubicin and ifosfamide followed by a liver transplant in May and 2 more rounds of chemotherapy in Aug and Sept. He just had his first post transplant CT Scans which show no evidence of disease; however, I am still cautious about getting too excited as I have not seen many survivors of this disease and there seems to be a lot of recurrence. Has anyone had long-term effects from the chemotherapy???
  • sarcomasister
    sarcomasister Member Posts: 7
    #30
    rhenry3 said:

    Undifferentiated Sarcoma
    I was glad to see some long-term survivors of Rhabdomyosarcoma. While my son's diagnosis is non-rhabdo it is similar and treated the same. He is 7 yrs old and was dx in Feb. 09 with an 11 cm mass in the middle of his liver. He recd 6 rounds of doxorubicin and ifosfamide followed by a liver transplant in May and 2 more rounds of chemotherapy in Aug and Sept. He just had his first post transplant CT Scans which show no evidence of disease; however, I am still cautious about getting too excited as I have not seen many survivors of this disease and there seems to be a lot of recurrence. Has anyone had long-term effects from the chemotherapy???

    GLORY HALLELUJIA!
    Glory Hallelujia! I left this network feeling pretty worried and not wanting to return because of fear about what I might read. Lo and behold, here is a long listing of survivor stories. Here is our story and please, please keep responding. It is such a lift to hear these and to not only read the sadness on the internet.

    My brother in law(42 years old now) was dx. 18 months ago with unspecified and/or Leiomyosarcoma. We have been to Mayo, MD Anderson, our excellent cancer center where we work, and ultimately to Germany to have laser metastectomy on his right lung. His primary was never found despite head to toe body testing. Every orafice of his body has been ultrasounded, prodded and explored. His primary, although rare, was ultimately thought to be in one of his lungs. He was not symptomatic but was found to have this disease on a trial of a new piece of CT equipment that they needed one person to try(THANK YOU JESUS).

    We have had tumor profiling done with both Clarient and TMD(Targeted Molecular Diagositics) and have learned that his tumors are receptive to PDGFR and EDGFR. This is ultimately very, very technical and baby research. However, we are particularly interested now in therapies that have worked for others since this last week we found growth in size and number in the left lung. I would like to know what people have been treated with as well as side effects, information you have etc.

    We are researching everolimus/metronomic chemotherapy and treatments which have made you disease free for so long. Please, keep writing. Thank you.
  • catbird
    catbird Member Posts: 33
    #31
    sarcomasister said:

    GLORY HALLELUJIA!
    Glory Hallelujia! I left this network feeling pretty worried and not wanting to return because of fear about what I might read. Lo and behold, here is a long listing of survivor stories. Here is our story and please, please keep responding. It is such a lift to hear these and to not only read the sadness on the internet.

    My brother in law(42 years old now) was dx. 18 months ago with unspecified and/or Leiomyosarcoma. We have been to Mayo, MD Anderson, our excellent cancer center where we work, and ultimately to Germany to have laser metastectomy on his right lung. His primary was never found despite head to toe body testing. Every orafice of his body has been ultrasounded, prodded and explored. His primary, although rare, was ultimately thought to be in one of his lungs. He was not symptomatic but was found to have this disease on a trial of a new piece of CT equipment that they needed one person to try(THANK YOU JESUS).

    We have had tumor profiling done with both Clarient and TMD(Targeted Molecular Diagositics) and have learned that his tumors are receptive to PDGFR and EDGFR. This is ultimately very, very technical and baby research. However, we are particularly interested now in therapies that have worked for others since this last week we found growth in size and number in the left lung. I would like to know what people have been treated with as well as side effects, information you have etc.

    We are researching everolimus/metronomic chemotherapy and treatments which have made you disease free for so long. Please, keep writing. Thank you.

    so glad to hear this
    i was diagnosed 1 mo ago with leiomyoma & this had given me hope as the dr's have not treated this type of cancer before
  • sarcomasister
    sarcomasister Member Posts: 7
    #32
    catbird said:

    so glad to hear this
    i was diagnosed 1 mo ago with leiomyoma & this had given me hope as the dr's have not treated this type of cancer before

    catbird, what are you doing for treatment?
    Catbird, what are you doing for treatment? Where is your LMS?
  • Unknown
    Unknown
    #33
    This comment has been removed by the Moderator
  • gimpy_girl
    gimpy_girl Member Posts: 2
    #34
    katydid_635 said:

    6 years in remission from ewing's sarcoma
    hi, my name is katy, i had ewing's sarcoma and i've been in remission for 6 years now. i'm not sure if 6 years is what you meant by long term remission...but that's where i am.

    Also a Ewings survivor...
    Hello I have been in remission from Ewings for 3 years...I know it doesnt seem long-term but feels like a century ago.
  • catbird
    catbird Member Posts: 33
    #35
    sarcomasister said:

    catbird, what are you doing for treatment?
    Catbird, what are you doing for treatment? Where is your LMS?

    lms treatment
    lms was fibroid on the uterus & not expected to be cancer. currently getting chemo gemzar 1 week then the gemzar & docetaxel the next week. where in germany did u go? I know someone else who went there for another cancer type. how is your brother in law doing?
  • mrr3rd
    mrr3rd Member Posts: 1
    #36
    5 years this year
    I was diagnosed in 2003 with synovial sarcoma in my right knee. My fabulous Doctors at Mass General Hospital in Boston, Ma were not only good but great! They not only saved my leg but with no chemo I am now five years free of that cancer! The tumor was 5cm x 5cm which they stated did not require chemo. I had five weeks of radiation then surgery. Unfortunately I have just been diagnosed with Squamous cell carcinoma of the penis. This is totally unrelated to the synovial sarcoma. I will need more surgery but it looks like no chemo or radiation in my future (I am crossing my fingers).
  • Tapua
    Tapua Member Posts: 1
    #37
    mrr3rd said:

    5 years this year
    I was diagnosed in 2003 with synovial sarcoma in my right knee. My fabulous Doctors at Mass General Hospital in Boston, Ma were not only good but great! They not only saved my leg but with no chemo I am now five years free of that cancer! The tumor was 5cm x 5cm which they stated did not require chemo. I had five weeks of radiation then surgery. Unfortunately I have just been diagnosed with Squamous cell carcinoma of the penis. This is totally unrelated to the synovial sarcoma. I will need more surgery but it looks like no chemo or radiation in my future (I am crossing my fingers).

    6 years Adult Soft Tissue Sarcoma and still kicking around
    I was diagnosed in 2003 with Grade 2b/3 Adult Soft Tissue Sarcoma which developed in my left calf and invaded my left anterior tibia. I am back at work, living life to the fully - got married 2 years ago to the man of my dreams and very happy. By the way I live in Woodstock NSW Australia your entry info insisted on a state and oddly though it recognised Australia it wouldnt recognise any of our states. So my profile says I am from Michigan ... I think:))
  • bertha
    bertha Member Posts: 1
    #38
    catbird said:

    lms treatment
    lms was fibroid on the uterus & not expected to be cancer. currently getting chemo gemzar 1 week then the gemzar & docetaxel the next week. where in germany did u go? I know someone else who went there for another cancer type. how is your brother in law doing?

    Chemo: gemzar & docetaxel
    Hi. I saw in your post that you are getting gemzar 1 week and then gemzar & docetaxel the next week. That is the same treatment plan that I've recently been put on. I had gemzar last Friday and am to get gemzar & docetaxel this Friday. How were the side effects of the gemzar & docetaxel combination for you? Thanks!
  • catbird
    catbird Member Posts: 33
    #39
    bertha said:

    Chemo: gemzar & docetaxel
    Hi. I saw in your post that you are getting gemzar 1 week and then gemzar & docetaxel the next week. That is the same treatment plan that I've recently been put on. I had gemzar last Friday and am to get gemzar & docetaxel this Friday. How were the side effects of the gemzar & docetaxel combination for you? Thanks!

    chemo gemzar & docetaxel - side affects
    side affects not too bad - lost 80% of my hair around weeks 4-7 then it stopped. i have not been sick at my stomach etc but i receive 2 medicines before the chemo intraveneously. i have gained weight & have swelling in my ankles etc in the past 3 weeks it started due to the steroids. i am able to work full time & i drive myself to & from the treatments, etc - i am very tired about 2 pm in the afternoon 48 hrs after treatment & typically get very little done for the rest of that day & night. my muscles are weak but i had surgery prior to the chemo etc so trying to get on the treadmill & build them up more - glad to know someone else is on the same treatment
  • catbird
    catbird Member Posts: 33
    #40
    bertha said:

    Chemo: gemzar & docetaxel
    Hi. I saw in your post that you are getting gemzar 1 week and then gemzar & docetaxel the next week. That is the same treatment plan that I've recently been put on. I had gemzar last Friday and am to get gemzar & docetaxel this Friday. How were the side effects of the gemzar & docetaxel combination for you? Thanks!

    chemo gemzar & docetaxel - side affects
    my comments "posted" twice the same thing ??
  • CaliforniaLesli
    CaliforniaLesli Member Posts: 4
    #41
    Liposarcoma Survivor
    Wishing you the best --- and sending you my story.

    I am a survivor. I have 19 YEARS and 4 MONTHS under my survivor belt. I am a survivor of a large retroperitoneal abdominal mass ----- actually the tumor was 8 pounds in weight!

    I underwent massive surgery - my surgeons were very aggressive........I had three courses of chemo --- struggled with the recovery. I had many organs resectioned (removed) and that has been a challenge along with a compromised immune system........but, I am strong, happy, take very good care of myself (with the help of my oncologist and other specialists.)

    Please have the strength to carry on, fight the fight and everyday move forward........it got me here, oh, so many years later.

    Best of luck, always.

    lesli

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