Rhabdomyosarcoma

baldheaded diva
baldheaded diva Member Posts: 2 Member
edited May 2023 in Sarcoma #1

Rhabdomyosarcoma, lets talk about this ugly CANCER!! In recovery since 01/2019.

Comments

  • kooliok8
    kooliok8 Member Posts: 1 Member
    #2
    I had rhabdo

    Hi! I'm 10 years in remission from alveolar rhabdomyosarcoma that was behind my eye. I still suffer some side effects from treatment to do with my eye and now echo scans are showing my heart is weakening from Doxyrubicin, but I have a very positive outlook overal. What's your story?

  • MoniqueD
    MoniqueD Member Posts: 1 Member
    edited April 2020 #3
    kooliok8 said:

    I had rhabdo

    Hi! I'm 10 years in remission from alveolar rhabdomyosarcoma that was behind my eye. I still suffer some side effects from treatment to do with my eye and now echo scans are showing my heart is weakening from Doxyrubicin, but I have a very positive outlook overal. What's your story?

    Hello,

    Hello,

    I was diagnosed with Rhabdomyosarcoma 12/6/2019 this also have me a spinal cord injury which is forcing me to use a wheelchair at the moment. I've had 6 rounds of chemotherapy and my doctor in now wanting to put me on a chemo pill (I'm still doing my research on this). 10 years remission is amazing I pray God gives me 10 plus years as I have a 3yr old I must see grow up. 

  • psrani18
    psrani18 Member Posts: 3
    edited September 2021 #4
    RMS Sarcoma Fighter

    My cousin is suffering hard from RMS Sarcoma. Any guidance or any strong positive experiences will help us stay strong and fight back. please share your stories here. Any information from your collection helps too. 

    GOD BLESS EVERYONE 

     

  • sreejit
    sreejit Member Posts: 2 Member
    edited September 2021 #5
    kooliok8 said:

    I had rhabdo

    Hi! I'm 10 years in remission from alveolar rhabdomyosarcoma that was behind my eye. I still suffer some side effects from treatment to do with my eye and now echo scans are showing my heart is weakening from Doxyrubicin, but I have a very positive outlook overal. What's your story?

    arms

     

    My wife is recently diagnosed with stage IV  alveolar rhabdomyosarcoma with lymp node and

    bone marrow involvement. She is 38 years old survived by two kids.

     

    I will be grateful to you if you can share your treatment experience .  

     
  • lollipop2000
    lollipop2000 Member Posts: 4 Member
    #6

    In recovery since 06/19 from embryonal rhabdo diagnosed when I was 18 in 2018. Hope everyone is okay!

  • copilox
    copilox Member Posts: 5 Member
    #7

    Hello, i'm french - Paris, 28, i have a rhabdomyosarcome alveolaire, i would like to talk with other people on same situation

  • casb
    casb Member Posts: 3 Member
    #8

    Diagnosed in 1962 at age 15, in thigh muscle, not expected to live, amputation was treatment of choice but my brave mother opted to try the relatively new radiotherapy.

    Massive doses (not given nowdays) has left me with a wasted leg . Big surgery in 1997 for infections caused by ossifcation and damage to tissues.

    Changes in bone noted over the years till 2019 insufficiency fracture, nail inserted in August that year as bone was about to break.

    That did occur during that surgery, no healing and March 2020 had a bone resection and a GRMS surgery .

    Leg is not wonderful but I still have it, need a walking stick to get around. Now 76.

    Love and prayers to those being treated for rhabdomyosarcoma

  • copilox
    copilox Member Posts: 5 Member
    #9
    https://csn.cancer.org/discussion/comment/1705851#Comment_1705851

    did you have lymph node metastases ?

  • casb
    casb Member Posts: 3 Member
    #10
    https://csn.cancer.org/discussion/comment/1705860#Comment_1705860

    No, I didn’t. The tumour was very large and the radiation was started while I was still in hospital, and continued for 2 years.

    My surgeon said at my 15 year checkup that I didn’t need to come back anymore,

    When I thanked him he said “don’t thank me, thank God as it was a miracle “.

    There was no chemotherapy back then either.

    Wishing you all the very best . ❤️❤️

  • mcmcd
    mcmcd Member Posts: 3 Member
    #11
    https://csn.cancer.org/discussion/comment/1705861#Comment_1705861

    Thank you for sharing your story. I have a dear friend who was recently diagnosed with rhabdomyosarcoma two weeks ago at the age of 17. Hers has spread to her lymph nodes and pelvic bones, and her prognosis is grim. Your miracle gives me hope for her survival.

  • casb
    casb Member Posts: 3 Member
    #12
    https://csn.cancer.org/discussion/comment/1707144#Comment_1707144

    Praying for your dear friend . xx

  • Elsies_dad
    Elsies_dad Member Posts: 3 Member
    #13
    https://csn.cancer.org/discussion/319456/rhabdomyosarcoma

    My daughter has ERMS and had intense and maintenance chemo and just found out its has spread to her lungs and already had radiotherapy there due to small nodules found at the start. Shes so brave and been told by consultant that the chemo she is on is unlikely to cure her. Wish i had a miracle. Anybody else heard of any other treatments at all that may be of help?we asked about DCT immunotherapy but since she is only 4 it isnt affective so we were told. Keep strong everyone and one day i hope we can get rid of this horrible disease for good.

  • mcmcd
    mcmcd Member Posts: 3 Member
    #14
    https://csn.cancer.org/discussion/comment/1707476#Comment_1707476

    Thank you so much!

  • mcmcd
    mcmcd Member Posts: 3 Member
    #15
    https://csn.cancer.org/discussion/comment/1707736#Comment_1707736

    I'm so sorry to hear of your daughter's prognosis. I will be praying for a miracle for Elsie.

  • Elsies_dad
    Elsies_dad Member Posts: 3 Member
    #16
    https://csn.cancer.org/discussion/comment/1707738#Comment_1707738

    Thankyou.

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