Adult High Grade Rhabdomyosarcoma

daniellehkrueger
daniellehkrueger Member Posts: 1
in Sarcoma #1

Our Mom was diagnosed and has received her first round of chemo.  She is 68 and chemo has hit hard.   We are battling local doctors who say hope is gone but my Mom and our family have not given hope.  She is Stage 4, high grade, we are working with MD Anderson but receiving local treatment.  We have been told she needs to be mobile for an additional treatment.  We are reaching out for anyone who has survived treatment or family members who have gone down this road.   She has an abdominal tumor and a metastasis to the back and hip.   Any guidance would be greatly appreciated. 

Comments

  • Mobjack
    Mobjack Member Posts: 10
    #2
    sending prayers and good thoughts

    Hello Danielle,

    I realize it has been a couple of months since you posted this, but I am just seeing the post for first time now, and the name of the cancer grabbed my attention.  I also had rhabdomyosarcoma as a child. Mine began as a testicular tumor and metastasized to the lymp nodes in my back.  I don't know the exact difference between the childhood variety and the adult variety, but I know that I was in a late stage of the cancer when I began treatment at age 12.  This was about 40 years ago, and I was part of a clinical trial that obviously went very well for me.  I was given the triple treatment of chemo, surgery and radiation--a combo that was very new at the time.  

    Unfortunately I have no real pearls of wisdom to offer you. I know that this is a particularly aggressive type of cancer, but I am here as proof that it can be beaten.  That said, even in my trial group, there were kids that received the exact same treatment as I had received but without the success that I was graced with. We cannot yet know why some survive and others not, but I know that having and holding a picture of health as the ultimate goal of treatment is as essential as the treatment itself.  I hope that your mother is doing well; she is lucky to have a family that is one hundred percent behind her recovery; so whatever the result of her treatments, keep your faith in her wellness as a part of her goodness and as a part of your love for her.  

    In kindred spirit,

    -Stephen

  • BLove333
    BLove333 Member Posts: 2
    #3
    There is Hope

    Hello,

    I am a 33 year old female who got diagnosed with stage 4 RMS last year. I have been cancer free for 9 months now, and just finished treatment. I did chemo and radiation. But also radically swicthed my diet to vegetarian, drink kangan 9.5 ph alkaline water, take CBD oil (medical marijuana), yoga, mediate and take supplements daily. The combination of east and west medicine knocked this rare, aggressive cancer out of the park!

    if you have anymore questions, please contact me though this site.

    Love and Light,

    Brittany 

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