rhabdomyosarcoma

kennysmom
kennysmom Member Posts: 4
edited March 2014 in Childhood Cancers #1
I NEED SOME HELP HAS ANY ONE HAD A CHILD THAT HAD RHABDOMYOSARCOMA IN THE PELVIS. MY SON HAD CHEMO, RADIATION AND SURGERY. HE HAS EXPIERNCE MANY LONG TERM SIDE EFFECTS. IS THERE ANY ONE THAT HAS HAD THIS SAME PROBLEM AND HOW DUE THEY FIGURE IT OUT

Comments

  • dickl
    dickl Member Posts: 39
    kennysmom,
    My son had a BMT 8yrs. ago for AML(LEUKEMIA)and although he's cured we have had many late effects mostly centered in the brain. The medical community has not been very helpful post-treatment. There are a few books that can be informative on late effects. One is "Suriving Childhood Cancer" by Wende Hobbe. You're not alone with these problems. Mail anytime if you wish to talk.
    dickl
  • jsham
    jsham Member Posts: 1
    I just found this website. My son was diagnosed with Rhabdomyosarcoma at 8 weeks old in June of 1985. It was in his abdomen and had to be removed along with appendix and much of large intestine 4 weeks after beginning experimental treatment (he was youngest on record at that time with rhabdo). Chemo was vincristine,cytoxin and actinomyacinD for 2 years. Monthly then quarterly then annual CAT scans for 4 years. He is 19 years old now and has defied all predictions of doctors! I would be happy to share experiences/problems, etc.
  • dfsupra
    dfsupra Member Posts: 1
    jsham said:

    I just found this website. My son was diagnosed with Rhabdomyosarcoma at 8 weeks old in June of 1985. It was in his abdomen and had to be removed along with appendix and much of large intestine 4 weeks after beginning experimental treatment (he was youngest on record at that time with rhabdo). Chemo was vincristine,cytoxin and actinomyacinD for 2 years. Monthly then quarterly then annual CAT scans for 4 years. He is 19 years old now and has defied all predictions of doctors! I would be happy to share experiences/problems, etc.

    i know this is an older email but my grandson has just had re occurance of rhabdomyo in the abdomen.. he has had surgery and is starting chemo again please reply
  • Jasonsmom
    Jasonsmom Member Posts: 2
    My son also has rhabdomyosarcoma-alveolar with t(2,13)translocation diagnosed in Feb 2004. He has had more than 1 relapse and is now on oral etoposide as palliative treatment. Hospice also comes once a week now to check his blood counts for the oral chemo. The doctors give us no hope, but we keep praying for a miracle. He comes and goes as he pleases--just last week he was involved in a jet ski accident(he was driving) and in a car wreck (he wasn't driving). My son is 19.
  • skpage
    skpage Member Posts: 1
    jsham said:

    I just found this website. My son was diagnosed with Rhabdomyosarcoma at 8 weeks old in June of 1985. It was in his abdomen and had to be removed along with appendix and much of large intestine 4 weeks after beginning experimental treatment (he was youngest on record at that time with rhabdo). Chemo was vincristine,cytoxin and actinomyacinD for 2 years. Monthly then quarterly then annual CAT scans for 4 years. He is 19 years old now and has defied all predictions of doctors! I would be happy to share experiences/problems, etc.

    My son was diagnosed with Rhabdo. in December of 1985. He was born on October 29, 1985, with a tumor on his right hand. We flew to Louisville KY when he was three weeks old, from SC. The tumor kept growing, and when he was seven weeks old, they amputated his right hand, leaving his thumb. He started chemo. that week, and continued chemo at Emory in Atlanta Ga. when we went back home. That was the closest place to us for treatment. He is now 19 years old also! He is an amazingly happy, outgoing, young man, with an exceptional smile and love of life. Congratulations on your survival story, you have been as blessed as I am. I saw a site tonight, which I will copy and paste here if I can, and wonder if the reference is to our sons, see below...

    Harjai MM; Bal RK; Nagpal BM; Sadhotra P; Maudar KK.
    Department of Surgery, Armed Forces Medical College, Pune 411040
    Paediatric hand tumours-synovial sarcoma : a rare malignancy
    Medical Journal Armed Forces India. 1999 Apr; 55(2): 169-70

    --------------------------------------------------------------------------------


    KEYWORDS:
    Soft Tissue Neoplasms/DI; Soft Tissue Neoplasms/RT; Sarcoma Synovial/DI; Neoplasms/DI; Rhabdomyosarcoma; Hand; Keratin; Immunohistochemistry; Biopsy; Tomography Scanners, X-Ray Computed; Radiography; Human; Male; Child; Case Report
    References: 2
    Record Identifier: NI204356

    I am happy to have found your message, and I am so happy that our boys are now healthy 19 year old:) Sheryl Page
  • Jasonsmom
    Jasonsmom Member Posts: 2
    Jasonsmom said:

    My son also has rhabdomyosarcoma-alveolar with t(2,13)translocation diagnosed in Feb 2004. He has had more than 1 relapse and is now on oral etoposide as palliative treatment. Hospice also comes once a week now to check his blood counts for the oral chemo. The doctors give us no hope, but we keep praying for a miracle. He comes and goes as he pleases--just last week he was involved in a jet ski accident(he was driving) and in a car wreck (he wasn't driving). My son is 19.

    I am heartbroken to tell you that my precious, sweet Jason passed away on his father's 50th birthday on 8/25/05. Jason was 19. I miss him terribly, but I am the only one in our house crying over it. His dad, 2 brothers and sister don't cry. He was a wonderful son. I will always grieve his death. We was a Christian and so I know where he is, but that doesn't take away the grief I feel.
  • calwilky
    calwilky Member Posts: 1
    Jasonsmom said:

    I am heartbroken to tell you that my precious, sweet Jason passed away on his father's 50th birthday on 8/25/05. Jason was 19. I miss him terribly, but I am the only one in our house crying over it. His dad, 2 brothers and sister don't cry. He was a wonderful son. I will always grieve his death. We was a Christian and so I know where he is, but that doesn't take away the grief I feel.

    So sorry for your loss. My
    So sorry for your loss. My 12yr old grand daughter entered heaven on Aug 24th 2oo4, we will forever miss her, she was 12 yrs old. Life does not seem fair, but we know our loving father in heaven has her now and we will all be reunited some day.