Grade 4 glioblastoma brain tumour

Hi Sam.  I too have gbm grade iv. I also have 3 young children , actually triplets. I was diagnosed when my wife was carrying them. My 3 girls are now 8 years old. I was also given a short prognosis but to prove how different we all are I'm still here. But  hopefully I can give hope to people out there, I remember the shock and processes that i went through. Denial is one them. For me it was closely aligned to the disbelief that my mortality had been brought fwd by something out of my control. I hope that i have provided a small amount of belief that prognosis is not a sentence. My thoughts are with you and your family. 

Kindest regards 

Mat. 

Hi Mat, 

Thank you for reply, that is fantastic news, how are guy doing now? What treatment did you have? Sorry for all the questions but I will try anything to beat this and stay with my beautiful family for as long as I can.

best wishes

sam 

Hi Sam.

It sounds as though you are planned to have the same treatment as me. I had tablet chemo tezolomide. Radiotherapy that was following a resection to try and remove as much as possible. I have assumed ur cancer is to the brain, is that the case? Mine is right frontal lobe. 

I went onto a regular programme of MRIs which have picked up additional changes and needs to go back onto chemotherapy. I am currently on my latest 12 month (planned) cycle of oral chemo. 

The oral chemo agrees with me so long as i take the anti sickness before i can feel a bit tired too but soldier on. I have been through many cycles of chemo. 

How old are your children? I have 3 girls. We live in Mid Wales. 

I hope i can help you as you experience this bitch of a disease. We need to try and remain positive, i know its a cliche but it is true. If you have any questions at all let me know. I don't promise to answer straight away. Busy busy house!

There are people that have lived longer than me. Look up cheryl broyle amazing woman. 

Kindest 

Mat

Hi, 

Mine is on the left side of the brain. I am also starting oral chemotherapy tezolomide for 6 months.

where about in mid wales are you as we also live in mid wales, Llandrindod wells. I am having my treatment in the QE Birmingham. I appreciate you replying as you are the first person I Have spoken to with the same.

Hi Mat,

My husband was diagnosed with GBM4 in Sept, he is now on PCV. So great to hear of someone doing so well, truly gives you hope. After reading your profile would love to hear your experiences. Appreciate you've got 3 young children so life much be very hectic for you at the moment.

Take care,

Lisa x

Hi Lisa.

Sorry hear of ur husbands diagnosis. Along the way i have used a number of supplements to support immune system. I understand that the pcv cocktail is pretty hard going with side effects. 

Diet is a strong aspect of the regime that i have 'tried' to follow even though through lockdown i keep yearning for that sweet treat a bit too often. 

I am not saying that anything in particular has kept my prognosis at bay and I would not advocate raising anybodies expectations of it doing so. But anything is worth a go when in this situation. 

I have lots of experiences to share if it helps you and your husband with the situation that you are in. If tezolomide stops working for me I think pcv will be my next port of call so you may be able to help me too!

Kindest regards

Mat.