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Medulloblastoma

Sameh shaaban
Posts: 11
Joined: Apr 2018

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 

Sameh shaaban
Posts: 11
Joined: Apr 2018

107 reads , no one comment , experiance , support ):

mlbeverlin
Posts: 3
Joined: Jul 2018

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.

Sameh shaaban
Posts: 11
Joined: Apr 2018

Thanks mlbeverlin

 

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