Medulloblastoma

Sameh shaaban
Sameh shaaban Member Posts: 11
edited July 2018 in Brain Cancer #1

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

  • Sameh shaaban
    Sameh shaaban Member Posts: 11
    edited July 2018 #2
    disappointed

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

  • mlbeverlin
    mlbeverlin Member Posts: 3
    #3
    Sameh shaaban said:

    disappointed

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

    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.

  • Sameh shaaban
    Sameh shaaban Member Posts: 11
    edited July 2018 #4
    mlbeverlin 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.

    Joined today

    Thanks mlbeverlin

     

Discussion Boards