LONG TERM SARCOMA SURVIVORS WANTED

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  • marc1957
    marc1957 Member Posts: 79
    #42
    lung sarcoma
    Only in the lung, rare they told me, usually it is spread to the lung.......

    two lobes removed, almost ( dec 8th ) 11 years, doing fine, mostly :)

    Ironically, I am scheduled for a da vinci robotic prostate removal, on the same day, 11 years later ( dec 8th ).
  • ttamng
    ttamng Member Posts: 10
    #43
    marc1957 said:

    lung sarcoma
    Only in the lung, rare they told me, usually it is spread to the lung.......

    two lobes removed, almost ( dec 8th ) 11 years, doing fine, mostly :)

    Ironically, I am scheduled for a da vinci robotic prostate removal, on the same day, 11 years later ( dec 8th ).

    Sarcoma spread to lung.
    My sister had synovial sarcoma on her L foot and it is spread to her right lung. I miss her and love her so much.
  • ma
    ma Member Posts: 6
    #44
    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

    your treatment location
    hi ronny, my name is kay. i have been thinking about going to md anderson in houston. is that where you went? i was just diagnosed in november. i live in arkansas and that wouldnt be so far to drive. my cancer is leiomyosarcoma and was uterine cancer. they told me that it is the kind that spreads seeds thru the blood but will start chemo the 22nd. how fast does this stuff spread or mastasise???? i had a 14 cm. tumor they are calling ahigh grade stage 1. anyone with info send me a note. i will pray for you all and yall can pray for me. thanks!
  • ma
    ma Member Posts: 6
    #45
    honey123 said:

    leiomyosarcoma
    Hi i had a leiomyosarcoma and have been cancer free for 2 and a half years

    same diagnosis
    hi, name is kay. you are the first i have talked to withe leiomyosarcoma. tell me about your experience. where did it start and has it spread any? i was just diagnosed in nov. mine was uterine. i start chemo the 22nd. dont know why it is taking them so long to get me started.where are you from???? please reply and god bless you.
  • ma
    ma Member Posts: 6
    #46
    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

    please contact me
    hi there, just a note to say that i have lms also and was just diagnosed. where are you from? i am 59. would love to talk to someone about this. dont know what to expect and it is real hard for me to be positive. thanks, kay
  • ma
    ma Member Posts: 6
    #47
    CaliforniaLesli said:

    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

    please call
    lesli, just read your post. yours was very encouraging. i am from arkansas. where did you get your treatment???? happy to hear about your sucess. could you please call me. @ 501-344-2304. thanks you. kay mason .
  • ErnieB3
    ErnieB3 Member Posts: 3
    #48
    CaliforniaLesli said:

    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

    Liposarcome Survivor
    Lesli,

    Well, my tumor was 7.9 lbs and they took my spleen, kidney,the tumor and a good amount of my colon to Cleveland. I live in Illinois.
    Is the lack of a number of organs causing you discomfort?
    Thanks for posting on this website. It is hard to find anyone with liposarcoma involving the abdoman. EWB_3@comcast.net
  • ma
    ma Member Posts: 6
    #49
    new but need a friend
    hi, im from arkansas. hard to get anyone to answere on here. how are you doing and how long have you had this? i was diagnosed in nov. my name is kay. would be great to hear from you and if you have heard from anyone else please let me know if you have any info. thanks
  • dill
    dill Member Posts: 1
    #50
    ronny said:

    Almost 10 years
    I am going on 10 years in May. I had Ewings sarcoma, with 2 recurrences with metasis to my lungs. I am currently on a clinical trial with no signs of it.
    Ron

    Hi
    How you making out? I had sarcoma last spring in my leg, radiation, and surgery for that. Now got it in my lungs, and the docs say there is nothing to do. Looking for information on the AMG 479. Looking for possible docs to treat, and any info you have about it. I will go anywhere, and do anything to beat this thing!!
  • catbird
    catbird Member Posts: 33
    #51
    ma said:

    please contact me
    hi there, just a note to say that i have lms also and was just diagnosed. where are you from? i am 59. would love to talk to someone about this. dont know what to expect and it is real hard for me to be positive. thanks, kay

    hi kay
    i responded to you i think it was you under the lms

    i am 56 yrs old in the dallas area
  • anitakeith
    anitakeith Member Posts: 1
    #52
    dill said:

    Hi
    How you making out? I had sarcoma last spring in my leg, radiation, and surgery for that. Now got it in my lungs, and the docs say there is nothing to do. Looking for information on the AMG 479. Looking for possible docs to treat, and any info you have about it. I will go anywhere, and do anything to beat this thing!!

    spread to lungs - chemo working so far
    Tried to reply earlier, new to this, will try again:
    Husband had sarcoma size of a rugby ball removed from thigh november 2008, spread to lungs & groin. Had 6 rounds of chemo, two different drugs on a trial, will get you the names if you need them, finished chemo april 2009, had clear lung & groin scans since. Had 30 radiotherapy sessions to thigh, still fine. Developed brain tumour (assume sarcoma) october 2009, had 12 radiotherapy sessions to brain, think it has worked as had lost use of left leg & arm which led to brain tumour diagnosis (lungs still clear!) and can now walk & use arm well.
    Press for some chemo, ask to go on a trial. We are in UK.
  • armygirl3549
    armygirl3549 Member Posts: 1
    #53
    sarcoma survival
    I am coming up on my 4 year anniversary. My tumor was in my left thigh, undifferentiated sarcoma. I had radiation but no chemo as it was classed at the U. of Washington as a low grade. I have some pain and swelling in my leg but feel very lucky.
  • cesrod
    cesrod Member Posts: 3
    #54
    marc1957 said:

    lung sarcoma
    Only in the lung, rare they told me, usually it is spread to the lung.......

    two lobes removed, almost ( dec 8th ) 11 years, doing fine, mostly :)

    Ironically, I am scheduled for a da vinci robotic prostate removal, on the same day, 11 years later ( dec 8th ).

    marc 1957, please let me know how to contact you, thanks.
    My wfe has a big tumor that is practically covering her entire right lung, it was diagnosed as high-grade malignant osteosarcoma, only in the lung, not spread from somewhere else, it looks very similar to what you had. At this moment she is feeling pain in the chest and back, also she is having problems with swallowing, and she is very weak, she has lost a lot of weight. We will appreciate to have a conversation with you to hear your experiences and recommendations.
  • BAEdwards
    BAEdwards Member Posts: 3
    #55
    dhempflinger said:

    I have synovial sarcoma also. Had for 10 years now.
    I was first diagnosed in july 1999. Had large softball size tumor under arm pushing on my scapula. Got it removed and zapped by radiation. Then reacurred in my lungs a few months later. Had chemo. Ever since, I've had 5 more reacurrances, mostly in my lungs. First hematologist didn't think I'd live more than 2 years, but here I am on my 10 year mark. First four years were very rough, but do too loving parents, family, and friends still alive and living my life to the fullest.

    Living with Synovial Sarcoma
    Nice to hear that you are doing so well. I have been fighting synovial sarcoma for a little over 4 years now. I was diagnosed in October 2005. I have had three surgeries, chemo. twice and ratiation once. It has matastesized to my lungs and lymph nodes. I just finished chemo. and I am getting ready to start radiation again to hopefully shrink the tumors. Surgery is not an option for me because of the location. I was just curious if you are cancer free or if you have heard of any successful trials for synovial sarcoma. Any info. would be greatly appreciated.

    Thanks,

    Beth
  • BAEdwards
    BAEdwards Member Posts: 3
    #56
    Tapua said:

    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:))

    Synovial Sarcoma
    I was just curious what kind of treatment you received. I was initially diagnosed with synovial sarcoma in my right forearm October 2005. I have been fighting it off and on for a little over 4 years. I have had 3 surgeries, chemo. twice and radiation once. It has matastesized to my lung and lymph nodes. I just finished chemo. which, from my scans showed that it didn't change anything. I am getting ready to start up radiation in hopes that it shrinks the tumors on my lymph nodes which are causing the most problem. Just looking for any info. on a great Doctor, a clinical trial which has worked etc. Any positive info. would be great. Thanks!

    Beth
  • kbranoff
    kbranoff Member Posts: 2
    #57
    ma said:

    same diagnosis
    hi, name is kay. you are the first i have talked to withe leiomyosarcoma. tell me about your experience. where did it start and has it spread any? i was just diagnosed in nov. mine was uterine. i start chemo the 22nd. dont know why it is taking them so long to get me started.where are you from???? please reply and god bless you.

    uterine leiomyosarcoma ma
    My cancer was found in the uterus after a routine hysterectomy to remove a large fibroid. A week later my doc called and said they had found cancer. I was shocked. Of course I was the lucky 4 in a miliion that get this type of cancer. I currently undergo treatment at Kamanos Cancer Center in Detroit. Rated #1 two years in a row. I consulted with them and a week later they had me set up for chemo. They work really fast. Sent me to a chemo class and off I go. I am receiving Gemzar and Taxotere. It's working. I have been on chemo for almost eight months with the only side effect being hairloss. That is the hardest but after a while, you get over it. Trust me. I had long beautiful hair and I almost don't even miss it. My wig looks great and I never have a bad hair day. With each scan, there has been shrinkage in my tumors. My doctor said he's never gone past 6 rounds and I am going on 11. He is quite impressed with my case. This cancer spread really quick. In dec. of 08, I had one small nodule on my lung. By June of 09 I had several. They couldn't confirm it was the LMS until I had a lung biopsy. The nodules had to be at least 1cm before doing a biopsy. By then I had several. I hope you are seeing a sarcoma specialist. This is very important. I am only 39 with 3 teenagers. I am going to kick this cancer's ****. Fight like a girl and beat this with me. Stay off of the internet except for support groups or survival stories. Alot of the info you get online is outdated and can scare the hell out of you. You are not a statistic you are an individual and everybody tolerates things differently. These docs are great but they are not God.
  • kbranoff
    kbranoff Member Posts: 2
    #58
    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.

    Awesome!! You give us all
    Awesome!! You give us all hope.
  • wendytennis
    wendytennis Member Posts: 1
    #59
    CaliforniaLesli said:

    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

    Your story makes me feel hopeful
    Hi Lesli:
    Congratulations- this is wondrful news.
    I am interested to hear about your encologist and treatment. I too had an 8 pound tumor in my retroperitineum and in Octoer of 08 had very agressive surgery removing my tumor, kidney, spleen and a piece of my colon. My tumor was encapusulated and the pathology reports showed no signs of metastis so I was not given chemo or radiation. In my 8 month scan new tumors were found. I am currently taking receiving my second round of chemo therapy- doxil.
    I will find out in a week if it is shrinking the turmor.

    Can you tell me who your drs. are and what your treatment has been.
    Best,
    Wendy
  • amybrook
    amybrook Member Posts: 3
    #60
    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

    Ditto
    I was so glad you see your post. I am a Rhabdo survior of 23 yrs. I am 33 and was diagnosed when I was 10. I agree that all you can do is fight it. I know there were a few times the pain was so bad, I wanted to give up and give in to it. Without my fmaily there to remind me of what I had to fight for, I may not have made it. I have been looking for another survivor of about the same age to compare long term side effects and issues. If you don't mind and would like just send me email. Thanks
  • Thomson
    Thomson Member Posts: 8
    #61
    anitakeith said:

    spread to lungs - chemo working so far
    Tried to reply earlier, new to this, will try again:
    Husband had sarcoma size of a rugby ball removed from thigh november 2008, spread to lungs & groin. Had 6 rounds of chemo, two different drugs on a trial, will get you the names if you need them, finished chemo april 2009, had clear lung & groin scans since. Had 30 radiotherapy sessions to thigh, still fine. Developed brain tumour (assume sarcoma) october 2009, had 12 radiotherapy sessions to brain, think it has worked as had lost use of left leg & arm which led to brain tumour diagnosis (lungs still clear!) and can now walk & use arm well.
    Press for some chemo, ask to go on a trial. We are in UK.

    Intamal Sarcoma
    I am very new to this. My husband has Intamal sarcoma which apparantly is very rare. He has had an operation, radiation and is now having a third type of chemotherapy. He has two more cycles of chemotherapy after which we are returning to Scotland, UK to be nearer family.

    Do you know of anyone who has Intamal sarcoma ?

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