Medulloblastoma
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
Comments
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disappointed
107 reads , no one comment , experiance , support ):
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Facebook GroupSameh shaaban said:disappointed
107 reads , no one comment , experiance , support ):
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.
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Joined todaymlbeverlin said: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.
Thanks mlbeverlin
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