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Jul 09, 2018 - 11:27 pm
My son 7 years old diagnosed medulloblastoma 11/5/2017.Done surgery 11/9/2017 . The surgeon was able to remove it all . Pathology revealed classic medulloblastoma . Spine tap negative . .then 42 days after surgery he went radiotherapy IMRT 56 CGry 31 sessions 5 every week after 5 weeks rest he begin chemotherapy . With cisplatin .CCNU and vincristine for 8 cycles 6 weeks apart from every cycle After first cycle . It gone good After 2nd cycle he had grade one ottotoxcity So decision to decrease cisplatin to half After 3rd cycle he had grade 2 ottotoxcity in one ear . Still grade one in the other and deteroriation in kidney function . Aim really anxious about his hearing and kidney healthy . Aim fear that maintance therapy will affect his further quality of life . Had read some papers about uncertainty of effectiveness of chemotherapy espacially in WNT activated pathway medulloblastoma R0M0 . I appreciate sharing experiance about chemo side effects as i read that damge to hear and kidey will be irreversible . Any help from survivores Dentist_sameh@yahoo.com Aim from Cairo. EGYPT |
Joined: Apr 2018
disappointed
107 reads , no one comment , experiance , support ):
Joined: Jul 2018
Facebook Group
I don’t have an answer for you but are you a member of the Facebook group Parents of Kids with Medulloblastoma? The members are super helpful.
Joined: Apr 2018
Joined today
Thanks mlbeverlin