Medulloblastoma

Hello, my 26 year old son was diagnosed with a medullablastoma in Feb this year he has had 2 major ops and also a shunt fitted. He has completed 6 weeks of intensive chemo and radio therapy at UCLH in London. He is currently on a break before starting 6 months of chemo again

its so so tough I am struggling to support him as he is so angry with life. - he has lost a lot of weight and being young and usually very fit it’s devastating x

Hi

i am really sorry to hear about your son, this is an awful disease. My son is only 19 and is now on the last week of radiotherapy, which has amongst other things made him really fatigued. He also has chemo once a week atm. My son got very angry initially and still gets angry at times usually with me, but it seems to be settling down a bit atm. We are all getting psychological support are you?  His walking is still a bit wobbly and he is receiving some physio exercises for this. Psychological support has helped us a lot with the uncertainty and frustration over this diagnosis. We are in Bristol and currently staying in hospital accommodation as we live in Weston super mare. My son Alex is group 4 Medulloblastoma and they suspect a spread to his spine and are giving him 2 extra boosts of radiotherapy to his spine area for this. I am really worried about this and we won’t have any information about his spine area until September as the doc has said that there is too much inflammation there due to radiotherapy to be able to see if the area is clear or not. There were no cancer cells in his lumber p. but something suspicious of malignancy! I have spent hours on the internet worrying and have to stop myself every night from repeatedly googling Medulloblastoma. It would be great to hear from you.

best wishes

Pam

Hello Pam,

im sorry to hear about your son too, he sounds like his journey so far has been similar to your son.

Ashley has just heard from the psychologist this week and will have some therapy soon. He had a little bit whilst in hospital when we first got his diagnosis. I know there is a wealth of support on line but Ash just won’t read anything. He also is a stage 4 but doesn’t know - we were never officially told although it is on all his paperwork. We were told he had an aggressive gene in the tumour called a mic gene hence why he had chemo and radio therapy on his head and spine ( precautionary) every day for 6 weeks.

Ash also had a lumber puncture before treatment started which showed no cancer cells. 

He had a scan last week and the tumour has shrunk but we still won’t know really till the end of his 6 months chemo which starts 3/4 July.

Ash is also very wobbly on his feet and I’m interested to read your son is having physio - I will ask about that.

Ash told me the other night he hates his life right now it just breaks my heart.

Does your son live at home? Does he work or still in education? Is he in a relationship? 

My biggest problem right now is not only his anger at what he is going through but his weight loss and loss of appetite - we were told it would come back but we are 5 weeks post treatment and he still lives on cereal and bananas and small snacks 

be good to hear from you

Jane x

Hi

my son lost a lot of weight too and was put in a low dose of steroids which almost immediately gave his appetite a boost. Maybe you could ask about steroids.  Yes ask about physio but I am surprised that they didn’t give him physio for the first 6 weeks after his operation. As we had physios visit us at home for the first 6 weeks. But after they stopped coming I asked again and he recently had an assessment plus was given exercises. It sounds like a gruelling regime as your son is having radiotherapy and chemo every day it must make him feel very sick. Is he at home with you?  Alex only has chemo for 15 mins once a week and radiotherapy for 6 weeks he only has 2 more radiotherapy sessions then he is on a 4 week break.My son was at College and doing A levels, no partner. He has a twin brother who is an amazing help as he gets him out and about to his mates etc. My phone number is 07434254254, if you want to chat/text.

Pam

Hi

My son Alex would really like to chat text or email you if possible. I am aware that we can exchange numbers and emails on the pm part of this site but I am not sure how to do this. Do you have any information about it? As he has recently met someone here in the hospital that had Medulloblastoma too and they really benefit from chatting and texting. Alex is still having some issues with his balance although it is improving. How is your balance? I also wanted to ask if you received proton treatment on the nhs? Is your long or short term memory affected? How soon into treatment or after radiotherapy did you notice this happening? Alex still had a prism on one of his lens of his glasses which seems to have corrected his vision gif the time being. Did you loose a lot of weight with the treatments as Alex has lost over a stone and struggles to put it back on. Anyway hope things are improving for you.

Best wishes

Pam

Hi, im 19 too and was diagnosed with Medulloblastoma last year

Hello! I’m so sorry I did not see this sooner. 
i had proton treatment on the NHS yes. Honestly my short term memory is rubbish! Often forget things, can sometimes be days/weeks/months time period. 
during my treatment I lost 14kg of weight. Suffered neuropathy from treatment and still recovering. My back became the worst pain ever, I struggled a lot because of my back and still do now (finished chemo in sept 2023). Coming up to my 6 month post treatment scan which is extremely anxiety provoking. I suffered massively mentally and still do, grieving for my previous life. All i do now is try and forget, I wish I could erase it all from my memory. It’s easier to push it back and not talk or deal with it, though i know later in life if i get there, it will probably bite me on my ***. I just try push it back as much as I can. My hearing has been affected from chemo but only slightly, high pitched noises I can’t hear. I’m sensitive to certain sounds like screaming or high pitch noises, it really irritates me for some reason, makes me mad and makes my ears feel funny. I noticed short term memory was being affected after treatment as during chemo they call it ‘chemo brain’. I was also in survival mode. I had a long treatment regime and many admissions for infection. I did end up with neutropenic sepsis. I also needed 10 blood transfusions to get through it all. My neuropathy has eased considerably since finishing though my back is still very bad. My eating has improved since finishing treatment but still underweight, but it is gradually going up. I do physio once a week because of muscle depletion and poor balance. It’s taken a lot of work so far and still a long way to go yet. I’m still not back at work. My job is 12 hour shifts and within the NHS. So until I can do that, i’m off work but do plan on going back to uni in september which will be coming up to 12 months post treatment. 
i really hope you and your son are doing well and recovering well. I’m sorry I didn’t see this sooner. Take care & best wishes! 

Hi, If im honest, I reckon my memories gone a bit but it could just my reaction being reminded alot that Im likely to develop memory problems I lost a significant amount of weight about 10kg but I never weighed a lot to start so it was a big deal. At one point they wasn’t gonna let me continue unless I weighed more. i had to put a pause on my education and work because Im very fatigued atm but Im starting back up next sept too. Even though this has been very hard for all of us, I found more hobbies now. Videography and making music just takes the edge off for me. I definitely still have eating problems but ig the chemo is still in my stystem.

Hope everything continues getting better