help for my baby with a rhabdoid tumor on her kidney

hopeforbabygrace
hopeforbabygrace Member Posts: 1
in Childhood Cancers #1
My daughter was diagnosed with a rhabdoid tumor on her kidney that has spread to her lungs when she was 5 months old . The kidney tumor was too large to remove so we have been trying to shrink it with chemo so we can remove it. we r getting a mixed reaction with the chemo. it has worked in the kidneys but not her lungs. I'm just wondering if anyone has experience with this type of cancer and has any other ideas or treatments we can try.

Comments

  • Hazel3
    Hazel3 Member Posts: 2
    #2
    MRTK
    My daughter is battling rhabdoid tumour of the left kidney also. She was diagnosed at 4 wks with stage 3 disease, had left nephrectomy and adrenalectomy, and has just completed 10 cycles of chemotherapy ( COG AREN 0321- revised UH -1 regimen) and 6 fractions of radiotherapy. She is 10 months old,and so far scans are clear. It has been a tortuous journey but we have had many wonderful days too. Please feel free to contact me. Wishing your family all the best.
  • NikkysMom
    NikkysMom Member Posts: 1
    #3
    My son is in the sme situation!
    My son was diagnosed with stage 4 Rhabdoid tumor of the kidney in January of this year. The tumor I his kidney responded well to the chemo and was removed, but the tumor in lungs was growing back based on his last scan. Did you guys find any treatment that worked on the lungs. It is so frustrating how hard these kids are fighting and how much they are enduring, but this disease will not leave them alone.

    Nikky's Mom.
  • Hazel3
    Hazel3 Member Posts: 2
    #4
    NikkysMom said:

    My son is in the sme situation!
    My son was diagnosed with stage 4 Rhabdoid tumor of the kidney in January of this year. The tumor I his kidney responded well to the chemo and was removed, but the tumor in lungs was growing back based on his last scan. Did you guys find any treatment that worked on the lungs. It is so frustrating how hard these kids are fighting and how much they are enduring, but this disease will not leave them alone.

    Nikky's Mom.

    MRTK
    I am so sorry about your little boy's diagnosis. In my daughter's case, the tumour was adherant to the spleen, pancreas and diaphragm, but the chest was clear, so I don't have any experience or advice in relation to lung disease. Our oncologist has consulted throughout treatment with Dr. Jeffrey Dome, Washington DC who is one of the world experts in rhabdoid tumours arising in the kidney. Our protocol was COG Aren 0321 - consisted of 5 cycles of cyclophos/ dox / vincristine and and 5 of carbo/ etop / cyclophos. Radiation was only advised when our little girl was over 6 months. It might be worth contacting Dr. Dome for some advice.
    We had another CT scan yesterday and are very nervously awaiting results. Words cannot describe how awful it is to see our precious babies battle such a horrendous disease.
    Will be thinking of you and your family.
  • Whitwhit
    Whitwhit Member Posts: 1
    #5
    Hazel3 said:

    MRTK
    I am so sorry about your little boy's diagnosis. In my daughter's case, the tumour was adherant to the spleen, pancreas and diaphragm, but the chest was clear, so I don't have any experience or advice in relation to lung disease. Our oncologist has consulted throughout treatment with Dr. Jeffrey Dome, Washington DC who is one of the world experts in rhabdoid tumours arising in the kidney. Our protocol was COG Aren 0321 - consisted of 5 cycles of cyclophos/ dox / vincristine and and 5 of carbo/ etop / cyclophos. Radiation was only advised when our little girl was over 6 months. It might be worth contacting Dr. Dome for some advice.
    We had another CT scan yesterday and are very nervously awaiting results. Words cannot describe how awful it is to see our precious babies battle such a horrendous disease.
    Will be thinking of you and your family.

    I hope everyone is doing
    I hope everyone is doing well. I just found this web posting. Our daughter was diagnosed last November with Stage II RTK in her right kidney. She was 5 weeks old at the time. Her kidney was removed and she was put the "Revised Regimen UH-1". We also tested her for the Gene and the test came back negative. By July of 2012 she had completed the 10 cycles of chemotherapy which went relatively well. After Chemo her CT body scans were clear but her brain MRI showed a small dot which they thought was a blood vessel. We just had a follow MRI yesterday and unfortunately the spot has grown. We are scheduled to meet with surgeons this Thursday as they want to remove ASAP with the belief that it is a related tumor. We are wondering if anyone else has had a secondary tumor pop up or if you know of anyone with this situation? We would really like to speak with someone to discuss as we are pretty sure the Dr.'s will be recommending radiation and additional chemotherapy.

    Thank you in advance and we will continue to pray for all of the families that fall victim to this horrible disease.

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