The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

Rhabdo Survivor

frenchi
frenchi CSN Member Posts: 1
edited March 2014 in Childhood Cancers #1
Hello, everyone. This is my first time chatting as a "cancer survivor", but I have found that the disfigurement caused by my treatment has left me with more scars than the cancer itself. Please contact me if you have had a similar experience.
Like Care

Comments

  • balcar-smith
    balcar-smith CSN Member Posts: 1
    #2
    Nice to meet a survivor of RMS.

    My 3 3/4 year old son has been fighting Alveolar RMS for over 2 years and has the physical scars from Chemo, Radiation & Surgery to half of the Pelvis & Upper Right Leg, which will unfortunately get worse as the rest of him grows up and over 6 feet tall but the bones in the radiation feild are frozen in time.

    Arthur's smile, eyes and spiderman suit disguise his broken body. However, I finally borrowed a wheel chair yesterday as I can no longer carry him on my right arm (17 kg / 35 pound) and care for his 5 1/2, 1 1/2 & 8 Week old brother...

    I agree that the cure carries a high price, but the alternative is all to real and reoccuring for me as Arthur odds are still 0 - 20%.

    Best Wishes and Good Luck

    Stuart (aka Arthur's Dad)
    Like Care
  • lindazame
    lindazame CSN Member Posts: 46
    #3
    Hi,
    Did you know there is a whole group of child/adolescent cancer survivors to talk to at acor.org. Look for the mailing list called LT-survivors. We have over 400 members including survivors of Ewings and Rhabdo who have various forms of disfigurement. It's a great group and has offered a lot of support and care to a lot of people.
    Like Care
  • dlrobins
    dlrobins CSN Member Posts: 17
    #4
    rhabdo
    Frenchi, My son Kyle 21 has rhabdo in the neck. He is just beginninng into the chemo and radiation side of this disease. Where was yours located? Debbie
    Like Care
  • dlrobins
    dlrobins CSN Member Posts: 17
    #5
    rhabdo
    Frenchi, My son Kyle 21 has rhabdo in the neck. He is just beginninng into the chemo and radiation side of this disease. Where was yours located? Debbie
    Like Care
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
    Like Care

Discussion Boards