Hello Cornish.  Sorry to hear.  My daughter 37 had just had second operation she has glioblastoma grade 4.  Married two young daughters.  I want to help in any way i can without interfering.  Her scans had been clear then suffered from forgetfulness tiredness and collapsed.  They thought she had had a TIA.  Any advice welcome.   Thank you.  Take care

Hello Mate,

unfortunately no actual cure at the moment we just have to live to keep them alive and hope that a better treatment is found during that time.

From our point of view de-bulking was vital and the introduction of a drug called Avastin has really helped slow the progression of the tumour.

This nightmare journey has shown me that this disease is not forgivving and everyone is completely different with regards to how the Cancer responds to all things.

Special trials are now ongoing with regards to CTLA 4 Inhibitors, but I fear any success will be to late for my lady.

You take Care and very best wishes to you all.  

Hi Cornish,

so sorry to hear about your wife my husband was diagnosed may’18 at the age of 36 we have two children 8 and 6. He has a a minimal debulk, radio-chemotherapy then a few round of chemotherapy on its own but had to stop as his liver function kept playing up. Currently on no treatment other than anti seizure and steroids. Last mri showed some shrinking of the tumour but also showing signs of tiredness. We are just taking everyday as it comes and making memories as we go.

The fear of him not being here is terrifying and explaining to the children. I’m just living scared but trying to stay strong and being positive.

Best wishes to your family.

Thank you for getting in touch, seems we are both on the same journey at the moment and yes day by day is all you both can do.

At the moment there is no cure, but auto immune trials are on going here in the UK, have you asked his Oncologist about these trials? 

My wife has been on a drug called Avastin for the past six months and this does seem to have slowed down the progression of the lump.

Our two children have just turned 14 and although they know Mummy is having ttreatmnent for Brain Cancer, they do not know the full gravity and thats how we both want it at the moment.

You take very special care of yourself, lots of love to you and yours.

Hi thanks for replying,

no we haven’t asked about any trials we haven’t seen his consultant since March as he been doing well and is stable at the last mri last month showed some shrinking of the tumour. 

Our 8 year knows daddy has cancer and a tumour but that’s it he is waiting on ADHD diagnosis, our 6 year old doesn’t really understand as she has sen. My husband has learning difficulties too and know what he has but not the prognosis as we wanted him too fight and not give up plus with his memory problem we’d have to keep explaining which wouldn’t be fair. 

Take care to you and your family

Sorry to hear about what your wife is going through. How is everything going? 

How is Avastin, is it having any positive effect? 

Did you have to fund this privately?

Just been quoted £1,250 for every 2 weeks from nhs hospital for my husband who has stage 4 bowel cancer. He too is only 38 and we have a 1yr old and 5 yr old.

Best wishes 

Toni x