Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

medulloblastoma

Spotify
Posted by

HI I am a 43 year old woman who had a brain tumour medulloblastoma . I had 5 ops to.my head to remove it but unfortunately could not remove all of it too dangerous for me . I have been left with effects of the damage done by the tumour I have poor balance and walk with a four wheel walker now I also have a  peg feed as have swallow problems in van eat a small amount of blended food or mashed no lumps in it only ten spoons of it , I also have poor vision and have  double vision in one eye also have a scar on that eye ad had a ulcer which had healed now but caused blurred vision.  I sm shakey in limbs too . I don't know whether I will ever get back to how i was. I am in a care home in lowesroft flats now as independent living carers vomebom regularly at times set . I would love to speak with anyone who is going through similar please get in touch with me 1 

Mrs_A
Posted by

Hello, I am a 43year old woman. I’ve got a brain lymphoma so for me it’s lots of chemotherapy. It has changed me beyond recognitio. I’ve gone from being a fit 43year old to someone whose hands shakes, no hair or eyebrows, walks very slowl. You are not alone x

Spotify
Posted by

Hi Mrs A

Thank you for your reply . I am not the same as before the ops I am thinking to go to headway as they help with brain injury I would have to travel to gorleston but would  like to  meet  people who have been through the same or similar . I try to remain positive and strong and think how much worse I could be where I live there are some who are worse than me x

Bobr
Posted by

According to a recent research Nilotinib, a drug that is used for treating chronic myeloid leukemia has discovered to be more efficient at treating medulloblastoma.

https://www.myhealthyclick.com/myeloid-leukemia-drug-found-effective-at-treating-childhood-brain-cancer/

LuLoo
Posted by

Hi i am 38 year old female i was Diagnosed with a Medulloblatoma when i was 7years old, I had operation to remove it followed by radiation  to my spine, i do not remember much but i can recall most of it, then in 2010 i was Diagnosed with a Meningioma, if you wish to talk then please feel free to to send a message 

Lucy

L T