Rhabdomyosarcoma Support Group

Rhabdomyosarcoma is a type of cancer, specifically a sarcoma (cancer of connective tissues), in which the cancer cells are thought to arise from skeletal muscle progenitors. It can also be found attached to muscle tissue, wrapped around intestines, or anywhere, to include the neck area. It is most common in children ages one to five, and teens aged 15 to 19.

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  • deleted_user

    i cant believe this is on here

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    hello i am 15 years old and i am a cancer survivor. i was diagnosed with stage III rhabdomyosarcoma when i was 4 years old. i remember the day, what i was wearing, my mom's tears, and me not understanding. i have had to fight a huge battle. a battle no child should ever undergo. i used to think as i got older it would nevr end. to this day i still have fear because of it. if i feel a wierd pain i...
  • jean

    Relate?

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    My son almost 2, was diagnosed 6 weeks ago with Rhabdomyosarcoma of the bladder. Can anyone relate or tell me what their children used for local control?thankyou!! Jeannie
  • mariejamistauhorehil

    anyone here?

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    im a young adult 21yo recently found out that i have RMS in the vaginal area scans showed about 5cm and but has not spread and i will be having a complex hysterectomy things are happening really fast for me im just really curious about what ive got ahead of me apparently theres only been 1 case of RMS here in new zealand me being the 2nd in an adult so my concerns are very high trying to find...
  • My little cousin who is 4 years old got a surgery because of a abdominal pain, pelvic mass in August 22. One piece close to the bladder was said to have been removed entirely. While the other piece binds up with the artery so there was some remaining mass in his intraperitoneal. Later on, he was diagnosed with embryonal rhabdomyosarcoma. On 9.6, the first circle VAC chemotherapy began and the...
  • deleted_user

    3 or 7 drug chemo regimen?

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    My son was diagnosed with rhabdo and the recommendation we have received is to go with the 7 drug regimen as opposed to the 3. For starters I will say that I realize that different children will react differently to these medications. But I was hoping people would share their experience - why they chose one over the other, etc. I do see that there are mini-forumsn discussing the individual drugs,...
  • deleted_user

    5 yo daughter just diagnosed

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    Hello everyone. My daughter was just diagnosed with rhabdo. I thought I could use some people who have "been there". She is going in for a bunch of scans tomorrow and we should know more about her staging, but we currently think she is stage 2. We are expecting 1 year of chemo with 4-6 weeks of radiation in about 4 weeks.Has anyone had a similar experience? We have an 8 yo son as well. We...
  • deleted_user

    I need help to help my Brother

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    My brother was diagnosed in 2009 with Rhabdo in his lower abdomen. He completed his 64 week protocol and was then "cleared" in August of 2011. Last week he noticed an enlarged lymphnode in his neck and the doctor's confirmed that it was back. Max and his doctor's think that he is in a good place to be starting chemo again, and they're probably right, but I feel like I am losing it and losing...
  • deleted_user

    nephew recently passed away

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    Hello, this is my first time posting here. My nephew recently passed away caused by this disease. His name was Benjamin, and he was 9 years old. He had so much to live for, a happy child that wrote journals about his love of Pokemon and his wish become a veterinarian when he grew up. I feel pain, but I am getting through it. I don't have any words to say to my brother or his wife. As much as I...
  • Relli

    10yo newly diagnosed:(

    Last Monday it was confirmed that my Nephew Seth has Rhabdomyosarcoma. We didn't know about the lump he has in his hand until about 9-10 weeks ago. Apparently he injured his hand last December and not long after a lump appeared on his palm just below his thumb. It wasn't all that painful so he didn't say much to his mum. At the time his parents were fighting and then went through a very nasty...
  • deleted_user

    Rhabdo Monster

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    Anybody out there fighting this monster too? I know only 350 a year!
  • deleted_user

    So not sure about my surgery

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    This is how it went you have(Rhabodmyosarcoma) a rapid growing tumor of 8cm. Your cat scan shows something in the breast and the nodes are being attacked(my words). Told Thankgiving day went back in Dec the tumor was at least 2 more cm, surgery scheduled for Jan 11. Doctor says, it would be in your best interest to remove the breast and lymph nodes come back and have reconstructive surgery or...
  • deleted_user

    adults with rhabdomyosarcoma

    hi is there any adults out there with or have had this?
  • deleted_user

    Awareness Ribbon

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    Does anyone know what color is designated specifically to Rhadomyosarcoma?
  • deleted_user

    sfsd

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    dfghdgdg
  • deleted_user

    Reoccurence w/ Rhabdo

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    my son was diagnosed in oct 08 w/ rhabdo (embyonal) in his sinus cavity. they removed it in 2 successful surgeries then continued w/ radiation and chemo (VAC). now, it is june, and we are faced w/ a reoccurence. i am scared to death....i know this is bad but don't want to hear this anymore....i just want to hear HOPE and ENCOURAGED and other good things. we are at children's hospital of...