Clear Cell Sarcoma of the Kidney

Our son was recently diagnosed with Stage 1 CCSK. He is currently undergoing chemo per the COG protocol (Regimen I). It has been very difficult and terrifying but we are trying our very best to stay strong and positive. We would love to connect with any family out there who is going through this rare diagnosis of CCSK.

Comments

  • IAmYusufSidi
    IAmYusufSidi Member Posts: 12
    Some important factors related to CCSK Stage 1

    In the current Children's Oncology Group protocol (AREN0321), all patients with clear cell sarcoma of the kidney, except patients with stage IV, continue treatment as in NWTS-5. However, patients with stage I who undergo lymph node sampling do not undergo radiation therapy to the tumor bed. Any patient with stage I who has not undergone lymph node sampling is upstaged to stage II. Patients with stage IV undergo treatment with irinotecan and vincristine in an upfront window approach before treatment with cyclophosphamide, etoposide, vincristine, doxorubicin, and cyclophosphamide.

    Surgical Care

    At presentation, radical nephrectomy is the initial treatment of choice if the lesion is resectable. If the size or extension of the lesion is in question, a biopsy is performed, and chemotherapy is administered, followed by surgical resection after a response has been obtained.

    Consultations

    Radiotherapist

    Once the tumor has been resected, the tumor bed and any other sites of disease are irradiated.

     

    Pediatric oncologist

    Primary care physicians should consult with a pediatric oncologist to determine standard and investigational treatment protocols.

     

    The present results have demonstrated that children with revised stage I CCSK using the NWTS-5 staging criteria have excellent survival rates despite the use of varying RT doses and chemotherapy regimens in the NWTS 1-5 protocols.

     

    Hope this might help you. And you can share your experienes and thoughts over here. We are happy to share experiences and more than happy to help you in the best moral way.

  • bingo124
    bingo124 Member Posts: 4 Member
    Ccsk

    my kiddo has been diagnosed with ccsk. Extent of spread is not known yet. So far surgery has been done to remove the big mass. 

    Plz let me know what to expect in chemo & red therapies. 

  • Live.Love.Laugh.
    Live.Love.Laugh. Member Posts: 4
    bingo124 said:

    Ccsk

    my kiddo has been diagnosed with ccsk. Extent of spread is not known yet. So far surgery has been done to remove the big mass. 

    Plz let me know what to expect in chemo & red therapies. 

    CCSK

    Hi. I understand how difficult this must be for you and your family. But believe me when I say kids are amazing and resilient and full of surprises. I can't really let you know what to expect because from what I've been told every child expriences chemo differently. But I can tell you how my son did. He was on Regimen I based off the current recommendation from the COG. It is an intense chemo regimen consisting for 4 chemo meds (Vincristine, Cyclophosphamide, Doxorubicin and Etoposide). I'm in the medical field myselt but one of the scariest part of this journey was sitting in a room where the doctor went over all the medications your child would be receiving and the risks and side effects associated with each. After hearing all this they ask for you to sign the paper agreeing to treatment after being told all the risks involved. As scary as it was we both knew it was the right thing to do. We needed to give our son a fighting chance and we would be there for him every step of the way. He did remarkably well. He never had to use his nausea medication at home. He never lost any weight. He never lost his spunk. He ran around, jumped off things and never would sit still. Young kids are so resilient the nurses would say. Expect many transfusions (whole blood and platelets). Expect Neupogen shots after each chemo round which helps build back the immune system after it gets knocked down by the chemo. The nurses will show you how to administer it. Expect a few fevers which will lead to hospital stays. Lastly, before you know it the treatments will end and next on the list are monitoring parameters (MRI, Bone Scan, X-rays, CT scans, ECHO). If there is anything else I can help answer please let me know. Your family will be in my thoughts.    

  • bingo124
    bingo124 Member Posts: 4 Member

    CCSK

    Hi. I understand how difficult this must be for you and your family. But believe me when I say kids are amazing and resilient and full of surprises. I can't really let you know what to expect because from what I've been told every child expriences chemo differently. But I can tell you how my son did. He was on Regimen I based off the current recommendation from the COG. It is an intense chemo regimen consisting for 4 chemo meds (Vincristine, Cyclophosphamide, Doxorubicin and Etoposide). I'm in the medical field myselt but one of the scariest part of this journey was sitting in a room where the doctor went over all the medications your child would be receiving and the risks and side effects associated with each. After hearing all this they ask for you to sign the paper agreeing to treatment after being told all the risks involved. As scary as it was we both knew it was the right thing to do. We needed to give our son a fighting chance and we would be there for him every step of the way. He did remarkably well. He never had to use his nausea medication at home. He never lost any weight. He never lost his spunk. He ran around, jumped off things and never would sit still. Young kids are so resilient the nurses would say. Expect many transfusions (whole blood and platelets). Expect Neupogen shots after each chemo round which helps build back the immune system after it gets knocked down by the chemo. The nurses will show you how to administer it. Expect a few fevers which will lead to hospital stays. Lastly, before you know it the treatments will end and next on the list are monitoring parameters (MRI, Bone Scan, X-rays, CT scans, ECHO). If there is anything else I can help answer please let me know. Your family will be in my thoughts.    

    Thanks

    my daughter is getting same medications. She is 9.5 m old now. But her stomach cant digest any solids. Drs cant find a reason. They say hopefully after chemo ends in july, she shud be able to. She is exclusively breastfed. also 6 chemo later we feel a little mass on the leg again, its 1cm. 3 more chemos left. Sorry i shud hv seen the msg earlier. Thanks. I wud love to talk to you. As u just recently went thru it.

  • William Xu
    William Xu Member Posts: 4
    CCSK

    My daughter is geeting same medications 2 years ago, she only 12 month, the doctor done sucessful operation, considering she is too young, we are not conduct chemo, she enjoy 2 years happy time, I take her travelling in China. unfort, CCSK come back from May.,2017, now we are wait for the operation. Due to a liitle mass on her last operation area.

    I hope that i could get some communication with all of you

  • William Xu
    William Xu Member Posts: 4

    Some important factors related to CCSK Stage 1

    In the current Children's Oncology Group protocol (AREN0321), all patients with clear cell sarcoma of the kidney, except patients with stage IV, continue treatment as in NWTS-5. However, patients with stage I who undergo lymph node sampling do not undergo radiation therapy to the tumor bed. Any patient with stage I who has not undergone lymph node sampling is upstaged to stage II. Patients with stage IV undergo treatment with irinotecan and vincristine in an upfront window approach before treatment with cyclophosphamide, etoposide, vincristine, doxorubicin, and cyclophosphamide.

    Surgical Care

    At presentation, radical nephrectomy is the initial treatment of choice if the lesion is resectable. If the size or extension of the lesion is in question, a biopsy is performed, and chemotherapy is administered, followed by surgical resection after a response has been obtained.

    Consultations

    Radiotherapist

    Once the tumor has been resected, the tumor bed and any other sites of disease are irradiated.

     

    Pediatric oncologist

    Primary care physicians should consult with a pediatric oncologist to determine standard and investigational treatment protocols.

     

    The present results have demonstrated that children with revised stage I CCSK using the NWTS-5 staging criteria have excellent survival rates despite the use of varying RT doses and chemotherapy regimens in the NWTS 1-5 protocols.

     

    Hope this might help you. And you can share your experienes and thoughts over here. We are happy to share experiences and more than happy to help you in the best moral way.

    Need you help

    Dear Yusufsidi,

    Greeting from William Xu , I am in China, I found you by internet, my daughter diag as CCSK 2 years ago, (she is around 1 year old), the doctor done the successful operation, she is stage I, we are not do any treamtment, due to the doctor could not give us any good suggestion or treatment protocols that we could understand, he just said that you could try it & conduct one year , one month ago, she diag a smell thing back in her last operation area (left). now we are wait for next operation.

    2 years past, I could found more information for CCSK, if you feel free, could you please give me some more suggestion.

    Thank you very much

    William Xu

  • William Xu
    William Xu Member Posts: 4

    CCSK

    Hi. I understand how difficult this must be for you and your family. But believe me when I say kids are amazing and resilient and full of surprises. I can't really let you know what to expect because from what I've been told every child expriences chemo differently. But I can tell you how my son did. He was on Regimen I based off the current recommendation from the COG. It is an intense chemo regimen consisting for 4 chemo meds (Vincristine, Cyclophosphamide, Doxorubicin and Etoposide). I'm in the medical field myselt but one of the scariest part of this journey was sitting in a room where the doctor went over all the medications your child would be receiving and the risks and side effects associated with each. After hearing all this they ask for you to sign the paper agreeing to treatment after being told all the risks involved. As scary as it was we both knew it was the right thing to do. We needed to give our son a fighting chance and we would be there for him every step of the way. He did remarkably well. He never had to use his nausea medication at home. He never lost any weight. He never lost his spunk. He ran around, jumped off things and never would sit still. Young kids are so resilient the nurses would say. Expect many transfusions (whole blood and platelets). Expect Neupogen shots after each chemo round which helps build back the immune system after it gets knocked down by the chemo. The nurses will show you how to administer it. Expect a few fevers which will lead to hospital stays. Lastly, before you know it the treatments will end and next on the list are monitoring parameters (MRI, Bone Scan, X-rays, CT scans, ECHO). If there is anything else I can help answer please let me know. Your family will be in my thoughts.    

    Need you suggestion

    Greeting from William Xu , I am in China, my daughter diag as CCSK 2 years ago, (she is around 1 year old), the doctor done the successful operation, she is stage I, we are not do any treamtment, due to the doctor could not give us any good suggestion or treatment protocols that we could understand, he just said that you could try it & conduct one year , one month ago, she diag a smell thing back in her last operation area (left). now we are wait for next operation.

    2 years past, I could found more information for CCSK, if you feel free, could you please give me some more suggestion.

    Thank you very much

    William Xu

  • Jiachen
    Jiachen Member Posts: 1
    edited July 2018 #9
    ccsk

    Hi,My son was diagnosed with Stage 4 Clear Cell Sarcome of the Kidney at 32 months old in April of 2016.Can you contact me at [email protected]?How is your child now? 

  • Ds46
    Ds46 Member Posts: 1
    edited February 2020 #10

    CCSK

    Hi. I understand how difficult this must be for you and your family. But believe me when I say kids are amazing and resilient and full of surprises. I can't really let you know what to expect because from what I've been told every child expriences chemo differently. But I can tell you how my son did. He was on Regimen I based off the current recommendation from the COG. It is an intense chemo regimen consisting for 4 chemo meds (Vincristine, Cyclophosphamide, Doxorubicin and Etoposide). I'm in the medical field myselt but one of the scariest part of this journey was sitting in a room where the doctor went over all the medications your child would be receiving and the risks and side effects associated with each. After hearing all this they ask for you to sign the paper agreeing to treatment after being told all the risks involved. As scary as it was we both knew it was the right thing to do. We needed to give our son a fighting chance and we would be there for him every step of the way. He did remarkably well. He never had to use his nausea medication at home. He never lost any weight. He never lost his spunk. He ran around, jumped off things and never would sit still. Young kids are so resilient the nurses would say. Expect many transfusions (whole blood and platelets). Expect Neupogen shots after each chemo round which helps build back the immune system after it gets knocked down by the chemo. The nurses will show you how to administer it. Expect a few fevers which will lead to hospital stays. Lastly, before you know it the treatments will end and next on the list are monitoring parameters (MRI, Bone Scan, X-rays, CT scans, ECHO). If there is anything else I can help answer please let me know. Your family will be in my thoughts.    

    2020

    new here how is son

  • jessccsk
    jessccsk Member Posts: 3 Member

    I no this post is old and probably won’t get a reply my son is 3 he has ccsk stage 4 I just wanted to no how everyone’s kids are ??

  • bingo124
    bingo124 Member Posts: 4 Member

    My daughter was

    my daughter had it stage 4, at 6 mo old age. Now she is 8 yrs. Her chemo ended when she was 1.

    she has some knee problem at age 3-4, simple steriod treatment helped. and some dark patches on her underarm recently at age 7-8.

    she never gains weight. Growing tall though like normal.

    My tears never stopped till now when I remember the events even while writing this post.

    I hope and pray for ur kid. Hospital stays were Hard, I am never at peace. Unless I go distract myself and go ok vacation often and be busy at work.

  • jessccsk
    jessccsk Member Posts: 3 Member

    Thank you so much for replying to my post! I’m glad your daughter is ok this gives me hope it’s been a long hard year we are due to Finnish next week I’m an emotional wreck and have found it really difficult as not many people have ccsk I really appreciate you replying to my post sending all my love