LONG TERM SARCOMA SURVIVORS WANTED

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  • bevans1942
    bevans1942 Member Posts: 14
    #202
    BDC said:

    MFH Sarcoma

    In my 6th year now, male, currently 45 years' old. Like all of you, had a real rough go of it -- over 70 zaps of radiation and was in a quasi-trial for Sutent -- took 212 of those pills and had over 100 hrs of resectioning the entire left-side of my body (Stage IV) -- presented in the axila and trunk, soft tissue mets to arm (able to save) and lymphatic system. Treated at Emory in Atlanta -- recommended highly. 

     

    Like to tell you all that it was some kind of distant memory, but still greatly suffer both physically (anatomy of left-side essentially "re-created"...chronic differred pain) and mentally -- suffer from severe depression as a result of my journey and still trying to regain my life back. For me, the ripple effect post-cancer was pretty bad. I was at an age where most aren't used to dealing with death...everyone rallied around me at first, then visits became phone calls...phone calls were downgraded to emails...then perhaps a text or two -- then nothing. Know I shouldn't, but carry a good bit of anger rocks in my bag as a result. Envy those who can just forgive.

     

    Would also like to say that I "took it" like a brave soul, but that would be a lie -- honestly embarassed the way I handled the ordeal -- died once from sepsis, but they brough me back (bad infection after a resection surgery) after 24 seconds of being, well, dead. My kids were old enough just to remember the "uglies" and convincing them (without lying) that dad will be around for a good while isn't always easy. If it came back, I really don't know if I would pursue treatment -- some things are worse than death.

     

    But one quite wonderful thing did result from my Sarcoma experience -- there's no better person that someone who is in the trenches with you and/or survivors. And I do realize the above-listed hurts mostly me and I am working on becoming a better "post-cancer" person -- but do harbor a great bit of anger for the the cliche "why-me?" question. Not proud of it in the least, but has gotten much better and I am committed to continually working on it. Ultimate irony is that I was a Hospice Councellor for over a decade...just need to follow my own advice. Be well folks and I wish you, with much sincerity, the very best on your journey and road to recovery. Thanks for reading. BDC

     

     

    Angiosarcoma

    I fully understand how you feel. I do not even discuss my cancer with any one anyone any more. 

    #1 people do not believe you as they have never heard of that before.

    #2 They do not believe you because they would like to ask you why you are still around,  I thought you were already dead.

    #3 They are not really interested. 

    #4 They can not get away from you fast enough, you might want a donation or be contagious. 

    #5 They just do not care, or its not their problem.

    #6 Yes your childern have the, I really thought you would die, and you are still here syndrome.

     

    I am an Angiosarcoma survior and proud of the fact that I may have paved the way for someone else down the road. 

    I am 71 years old and I have fought this devil for around 16 years, the last time was it for me.  

  • alexjr
    alexjr Member Posts: 1
    #203
    hemangeopericytoma

    There's a Yahoo HPC (haemanteopericytoma) group.  I just finished sending them the following:

    "I went for my tenth annual MRI at MSK last week, and once again, there was no sign of any new growth, or any growth in the estimated 5% that remained after the original (primary, encapsulated) tumor was removed from inside my spine.  They told me that I didn't have to make an appointment for next year -- I am officially free of the original HPC.

    The tumor was so large that the outward pressure destroyed the backs of my T7 and T8 vertebrae, exposing the spinal column; they protected it by pulling over one of my trapezius muscles and anchoring it in that area.  I went through a several-years long period of discomfort and loss of a lot of some mobility; I learned from physical therapy to build up the relocated muscle with daily exercises, so aside from having to learn new ways to get up from the floor, I am about as mobile as somebody of 76 can reasonably expect to be. There are radiation burns that have never healed; I wear a diving shirt whenever I go swimming.  

    It remains a mystery to my radiation oncologist as to why the outcome was so successful -- the only thing he is clear about is that my HPC was particularly non-aggressive and slow-growing, but maybe that had something to do with my immune system, or lifestyle, or genes, or where in my body it occurred.  He did say that in the future, it is likely that cancers will be classified by their genetic makeup, as opposed to the areas of the body where they most commonly occur."

     

  • chriswife
    chriswife Member Posts: 4
    #204
    ljgetfit said:

    synovial sarcoma survivor
    i am a synovial sarcoma survivor. 6 yrs!!! just did Relay 4 LIfe on friday!

    tumor lungs lymph node

    Was it only a tumor. I cant find anything if its in your lungs and lymph nodes like my husband. Figuring out what to do n where to go. Live in st louis mo

     

     

     

  • chriswife
    chriswife Member Posts: 4
    #205
    lesslie said:

    a French mummy in research of information !
    Are you still there?
    I would like to exchange emails, as I also have had synovial sarcoma for seven years (first on on the left hand), with 2 reaccurances in lungs at the fifth year and the seventh year. I would like to exchange with you on the long term management of this illness, how did you do, many times operated? chimio at each time? how did you handle this? I am affording my fifth round of chemio this year (after five rounds in 2008) and I just believe that I will stop it at the sixth and basta ! They are talking about ablation by radiofrequency on the tumor which left (I had two but one disappeared with chimio)
    please answer me, I am French and we can find nothing in our country about synovial sarcoms like your forum, you are my only hope you know about having more knowledge on the subject? I have a six years old daughter who is now praying and has many hopes on my healing, I can not leave her in this cruel world without her mummy. I am now 35 years old.
    I would like to have information on the relevance of a pleuropneumomectomy, as in my hospital in Marseille, 12 out of 14 people operated for synovial sarcoma have not made it. So only 2 long terms survivors out of 14! Can someone just give me more hope than that? It does not help me.

    french mummy

    Like to hear how you are today. My husband has this

  • chriswife
    chriswife Member Posts: 4
    #206
    BAEdwards said:

    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

    synovial sarcoma

    My husband has it in lungs n lymph nodes need info. No treatment started yet. Live n st louis mo not sure where to go. Havent heard about surviors r how long lived with it. Only people with the tumors only

  • chriswife
    chriswife Member Posts: 4
    #207
    BAEdwards said:

    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

    Living with synovial sarcoma error flagged

    Error flagged i wanted to save and mark this for later. Not sure how to do this stuff yet

  • Kattseven
    Kattseven Member Posts: 1
    #208
    Dianosed with LMS in 2012.

    Dianosed with LMS in 2012. Still.here !Smile

  • bevroc1
    bevroc1 Member Posts: 1
    #209
    myxoid lipo sarcoma 15yrs ago buttock area

    Fairly large resectioning Friday the 13th 1999, which must have been a lucky day.  Had symptoms for over 2 years before getting diagnosed, lots of follow up but no signs of recurrence so far.   Residual problems are all from pretty intense radiation (5x/wk for 3 months).  No chemo (it apparently didn't work on my type).   Overall picture is that radiated area is getting older faster than the rest of me, causing some problems up and down the chain.  Helps that I am in fitness and medical field so doing pretty well.   Was wondering if anyone knows of any longterm studies for radiation and cancer survivors?

  • Lovelyladylump
    Lovelyladylump Member Posts: 1
    #210
    ljgetfit said:

    synovial sarcoma survivor
    i am a synovial sarcoma survivor. 6 yrs!!! just did Relay 4 LIfe on friday!

    Synovial Sarcoma 2017

    Hello,

    i was just wondering if you are still in remission? I have just been diagnosed with synovial sarcoma in my abdomen wall. I don't see many posts about this type of sarcoma especially in a strange place like the abdomen. I was just wondering how everything is going for you now? And what you undertake to get the cure? I'm looking at chemo, radiation and surgery. 

     

    Hope your well xoxo 

  • vietnamvet
    vietnamvet Member Posts: 1
    #211
    ljgetfit said:

    synovial sarcoma survivor
    i am a synovial sarcoma survivor. 6 yrs!!! just did Relay 4 LIfe on friday!

    I survived Synovial Sarcoma

    I survived Synovial Sarcoma for the last 43years

    It was in my left hip joint

     

  • 490000
    490000 Member Posts: 2
    edited August 2017 #212
    45 year survivor ! fighting edwing sarcoma

    First tumor at 16 year old  another at  17 biopsy edwing sarcoma 78-80 radiation and kimo .

    2000 3 met in my lungs, surgery no kimo 2010 1 met in right lung surgery no kimo ,

    2015 mets to lung to many to count  surgeon got 13 out out right lung, no kimo started protocell after leaving the hospital,

    1mm cat scan show clear lungs last june 2017,  glory be to god.

  • 490000
    490000 Member Posts: 2
    edited September 2017 #213
    45 YEAR SURVIVOR EDWING SARCOMA

    AT 16 FIRST TUMOR SURGERY 17 SECOND RADIATION AND QUIMO IN 78-80 METASTASIS IN LUGS 20 YEARS LATER ( 2000) SURGERY NO KIMO METASTASIS IN LUNG AGAIN IN 2010

    SURGERY  AGAIN NO KIMO METASTASIS AGAIN IN 2015 13 TUMORS TAKING OUT DOCTOR SAY THEY WERE DOZENS .AFTER SURGERY STARTED PROTOCELL CLEAN SCAN 4 MONTH AGO.

    GOING NEXT WEEK FOR SCAN.       Psalms  34:17

  • ccarnegie
    ccarnegie Member Posts: 1
    #214
    Undifferentiated Sarcoma

    I was diagnosed in July 2015 and had surgery for removal and now have a nuscle flap.  Not the best looking scar but i am alive! It has been two years and I am looking for survivors with similar stories.  I had radiation and now get scans everry 6 months.

  • carolann710
    carolann710 Member Posts: 8
    #215
    ccarnegie said:

    Undifferentiated Sarcoma

    I was diagnosed in July 2015 and had surgery for removal and now have a nuscle flap.  Not the best looking scar but i am alive! It has been two years and I am looking for survivors with similar stories.  I had radiation and now get scans everry 6 months.

    undifferentiated liposarcoma

    hi,

    same here ......just diagnosed and getting ready for radiation......big scar ..not my worry though.....

  • Lindajo58
    Lindajo58 Member Posts: 2
    edited November 2019 #216
    ccs survivors, answers, help

    just looking for answers dionosed in oct 2018~ radiation and surgery 2/19 now working feeling good~ clear tests so far feeling hopeful although reading very dismal stories, anyone else with ccs

  • CSN_Bill
    CSN_Bill admin Posts: 28
    #217
    Old Thread

    Hi Lindajo58, 

     

    I just wanted to point out that this is a very old forum, so you may want to try posting your questions in a new Forum Topic, the link for which can be foound towards the top. The last post to this thread was in 2017. New threads, or forum topics, can be seen easily by the rest of the members and you have a much better chance of someone seeing it and responding. 

     


    Thank you, 

    Bill

    CSN Support Team

  • Resheed
    Resheed Member Posts: 2
    edited May 2021 #218
    13 years Ewing’s sarcoma survivor!!

    Hello From Westland Michiga, I had it on my right heap, a ton of chemotherapy it ended it up with amputat ! Just keeping my follow up with Oncolgy doc yearly in case ?‍?

     

     

  • Oneinabillion
    Oneinabillion Member Posts: 25 Member
    #219
    I'm still here you barstreds

    Quoting from the movie Pappion seemed appropriate. I'm still here. If you look back I had LMS back in 2012 and it's 2021 now so just wanted to let people know that. I had a 10cm tumor in my perineal cavity that was removed along with one kidney. Although I did have a recorance in my chest area in 2018 it was small being that I get ct scans every year (just got off the semi annual plan) and they removed that. The bad news of course was Being that it came back it made it a lot more likely it will come back again but the not as bad news is being that it took 6 years to come back and was only about 1 cm means it's relatively slow growing and can hopefully be removed if and when it does come back again. Back to every 4 month scans. My heart goes out to those of you that haven't had as good of results as I had so far. We are all on a time schedule we just don't know what it is so all I can say is do your best to try to get some enjoyment with whatever time we are on this earth. Sorry for the pop psychology but what else is there reAlly. Love to all and as my father used to say when he was alive "I have to get well to be well"

  • Wardhaus
    Wardhaus Member Posts: 1 Member
    #220

    25 YEARS


    I'm making enquiries on behalf of my mum, it's a little overwhelming for her to search for people with similar experiences to her at the moment. She had a chondrosarcoma growing in her right femur. The surgery involved:

    • cutting her leg open from hip to ankle
    • removing six inches of the femur
    • having a donor bone put in place
    • her right fibula removed from its place and put alongside the donor bone
    • bone marrow removed from her right ilium to put either end of the donor bone and cut femur
    • a plate screwed in place with a dozen screws to hold it all together

    She had a screw in her ankle to try and strengthen it, but it was removed after proving mostly useless. The first bone marrow graft didn't take, so it was repeated. She has a stump of bone ending a few inches below the right knee and above the right ankle from where the fibula was removed, and the top stub is often pulled out of place.

    Because so many nerves were cut, she needed to not only physically learn to walk again, but her brain had to remap the neural pathways - some patches were still numb up until a few years ago.

    This month on June 17th, will be the 25th year since her operation.


    My mum is looking to talk to someone, anyone, who may have had a similar experience. She doesn't call herself a survivor, she just lives and is grateful for every day, however much pain she may experience every minute.

  • lowens313
    lowens313 Member Posts: 1 Member
    #221

    I am just starting my survivor journey after chemo for Ewing’s sarcoma.

    I would like advise on how to handle “being a survivor”. There are CT and PET scans every 3months in my future, so I feel like i will always be looking over my shoulder. The threat of a recurrence is always there.

    How did you move on from under this cloud?

    it is causing me great anxiety

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