Chemo for rhabdomyosarcoma

sholmes
sholmes Member Posts: 2
in Sarcoma #1

I am 26 yrs old and I was diagnosed with Spindle cell/sclerosing rhabdomyosarcoma. The tumor was in my lower left leg and I was amputated after two rounds of chemo. The chemo wasn't effective and the tumor size increased during chemo. My oncologist suggested 4 rounds of post-operative chemo but the effectiveness is uncertain. Since I was very sick last time I had chemo, my oncologist lets me decide whether I would continue chemo. Not sure what to do now. 

I am wondering whether anyone has had Spindle cell/sclerosing rhabdomyosarcoma? Are there any suggestions regarding whether I should continue chemo?

Comments

  • Lotusgirl
    Lotusgirl Member Posts: 5
    #2
    Continuing treatment

    Hi,

    I didn’t have the same type of rhabdo as you. I had rhabdo before it was even differentiated as A or ERMS

    I was given three months to live in 1972. 

    I know my perspective is a little different than yours. Because of my treatment, I have had ongoing issues throughout my life. So, at least I can speak to you from a place of knowing what it is like to have times where you feel continually sick.

    None of us get out of life alive. We will all face death at some point. I think that overcoming obstacles is part of our soul growth on this earth plane. I have wanted to give up many times, too many times to count. There is hope for your future. Hope that after what may be an unpleasant battle, you will be a shining beacon of health and hope for others. 

    My prayers are with you...

  • sholmes
    sholmes Member Posts: 2
    edited January 2018 #3
    Lotusgirl said:

    Continuing treatment

    Hi,

    I didn’t have the same type of rhabdo as you. I had rhabdo before it was even differentiated as A or ERMS

    I was given three months to live in 1972. 

    I know my perspective is a little different than yours. Because of my treatment, I have had ongoing issues throughout my life. So, at least I can speak to you from a place of knowing what it is like to have times where you feel continually sick.

    None of us get out of life alive. We will all face death at some point. I think that overcoming obstacles is part of our soul growth on this earth plane. I have wanted to give up many times, too many times to count. There is hope for your future. Hope that after what may be an unpleasant battle, you will be a shining beacon of health and hope for others. 

    My prayers are with you...

    Hi,

    Hi,

    Your encouragement is really really important to me. Thanks so much! I am wondering what kind of treatment you received at that time? Was it surgery or chemo? 

     

  • Cuban
    Cuban Member Posts: 8
    edited February 2018 #4
    Hi SHolmes...saw your name

    Hi SHolmes...saw your name and thought of Sherlock Holmes. I have rhabdo like you, with spindle cells...although it behaves like UPS. I was told my leg may be amputated. However, we started chemo first to see how I would respond. Did three cycles of VAC. During that time period I had rapid mets to my lungs. From there we tried doxorubicin and lartruvo. I did two cycles. It slowed my growth, but there was still growth. I'm starting votrient now. As my cancer moved so fast, they opted not to amputate. I would suggest the chemo, as it seems this cancer will move to one's lungs....but you may be blessed and not experience that. I hope you don't. Keep fighting, but stay on top of it. Scan every three months and at the first sight of a nodule or nodules, opt for chemo, nodule removal, or ablation.

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