We are looking for clinics for 10 months old boy with rhabdomyosarcoma cancer

Davulcu
Davulcu Member Posts: 1
in Sarcoma #1

Hello to everyone! I am a volunteer. We are looking for clinics for 10 months old lovely boy Svyatoslav with rhabdomyosarcoma cancer. I will be so grateful to everyone who provides us the list of clinics over the world with effective/experimental technics of treatment or give us the advise. The boy has gone through the chemotherapy here in Russia and unfortunately, it has not worked. We are in a great disappointment and we are confused. Also, probably there are some unique experimental methods that can help us, we are able to participate in them. 

Diagnosis: Malignant rhabdoid tumor of the soft tissues of the right shoulder with extension to the right axillary, subpectoral region. Multiple metastases-into the lungs and brain.

If it needable we can send MRI and other documents on email.

Sorry for disturbing and thank you for participation in boy's future...

 

Comments

  • Meredithz
    Meredithz Member Posts: 1
    edited May 2018 #2
    Clinics I would HIGHLY recomme

    I was 41 yr old women when I was diagnosed. I had a  high grade spindle cell Sarcoma in my left maxillary sinus. I Started treatment at Mayo Clinic in Minnesota. I  was shockingly disappointed with their lack if knowledge and inabillity to shrink the Tumor. After 2 rounds of chemo they wanted to give up on the Chem and go straight to surgery. That was unacceptable. My tumor was located in my Maxillary sinus which meant they would have to remove my left eye to get the proper margins.

    We flew to MD Anderson in Houston. I can not begin to tell you how different MD Anderson is to treating Sarcoma’s Their doctors have probably the most experience then any other hosital with Sloan Kettering being close, in the world. We had relocated to Mayo Clinic in  Minnesota termorarily (we live in Florida) we then  re-packed up our stuff and was at  MD Anderson a week later. My Oncoligist, Dr Benjamin, was straight with me He said I am going to put you close to your death bed but I am going to save your life. And that is what happened, their team not only saved my life, they saved eye and my face looks almost the same presurgery. They used my fibula bone in my calf to rebuild the left side of my face and gums. There is ABSOLUTELY no question in my mind. If you want to not just love but to also thrive after cancer Head to MD Anderson. My team was Dr. Benjamin,, Dr Hanna, Dr. Hanasono, Dr. Allen and Dr. Cardoso. They were awesome. They have created a raving with Me. Good luck and I will pray for him

  • Lilo
    Lilo Member Posts: 4 Member
    #3
    https://csn.cancer.org/discussion/comment/1629854#Comment_1629854

    Hello,

    My 1 year and a half year old son was just diagnosed with Rhabdomyosarcoma, and his cancer was resistant to chemo. Can I ask how you were admitted to MD Anderson? Did your doctor made a referral? I am looking for anything that could help my son. Thank you in advance.

    JP

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