Grade 4 glioblastoma of my father aged 70

Hi

A warm welcome to the group. So sorry to hear about your dad,

I've just left a reply for you on one of the other threads you had posted against. 

Hearing the diagnosis is a shock to the system  and it takes time to get your head round it. A GBM4 journey is a roller coaster ride but as I said in my other comment, I feel that the people best placed to support your dad are the team who know his case. We routed from the private sector into the NHS as our local private hospital wasn't equipped to deal with a  case like G's. My personal thoughts are that private isn't always the answer. Sorry.

That said this is a safe and supportive space and I'm confident other members will share their thoughts with you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Please remember to look after yourself here too. Don't under estimate the impact this diagnosis has on the whole family. It's rollercoaster ride so please take time to recharge  your batteries, It'll put you in a stronger position to support your dad in the long run

love n hugs

Wee Me xx

My thoughts are with you and your family. My husband is 76 and was diagnosed with Grade 4 tumour in September but unfortunately it is inoperable. Radiotherapy was going to be an option but only a shortened course but this too is now not an option because my husband is too weak to cope with the ordeal. We, myself, daughter and son are doing everything to make his final months as comfortable and happy as possible. We have got lots of support on board but nothing prepares you for the shock of the sudden diagnosis and what lies ahead. The consultant and oncologist both said to make the most of the time we have left and that is what we are doing. 

Thank you for this.

I am worried my father is now too weak as he doesn’t want to get out of bed (traditionally when he has been ill before he has always taken to his bed - rather than going and embracing the other routes to make himself better) but through my work I have enormous knowledge of the body and as a result know how being in bed is going to be weakening him from muscle and bone density decrease but he just won’t get up. He’s also very confused in terms of not understanding why we ask him to do things (or that is at least what he says) but we know he is struggling to get the right words to communicate yet his understanding is generally pretty good. 
so it’s very heartbreaking to watch as he doesn’t want to do anything.

if anyone has any knowledge of expert private consultants - regardless of location - I’d be so grateful. 
Thank you for your help.

Hi Alexandra I'm so sorry to hear of your father's situation. It's a really tough thing to deal with - for him obviously but for you and for all the family. Wishing you the very best of luck and hope you find treatment and help soon.

I'm not sure what going privately (unless you have insurance) would achieve in the short term. The standard of care is surgery (sounds like this isn't an option, but could be worth getting a second opinion?) followed by radiation and chemo. Nothing is going to be as helpful as those tools in the short term. Is your father on steroids? His symptoms may be affected by swelling which steroids would help with.

Other treatments I think may be more likely to come into play when he stabilizes, but obvs I'm no doctor and you need to get good advice. re private consultants - the ones I've heard of in London who treat privately as well as NHS (I believe) are Dr Williams at Imperial and Dr Mulholland at UCH.

Sending love and hugs x

We as a family have witnessed the not understanding what is being asked and also my husband could not get the words out. This made him very agitated. Through help from the oncologist, epilepsy nurse and GP I think we have got his medication balanced for the time being and his understanding and speech is ok again.It is a balancing act with the medication and you do need the different parties working together. I understand you wanting to go private but I am sure the NHS would offer more if they felt it was in your father’s best interest.  It is so hard when no treatment is being offered but we as a family have accepted this and just want to make my husband’s time as peaceful, calm and happy as possible. My heart goes out to you because I know what you are going through.

Hi  Evajean, thank you so much for your message - it’s comforting. Likewise my heart back to you because it feels like walking through hell currently and being utterly helpless…

it’s interesting regarding the speech - we haven’t been given that sort of option - how did you go about getting this coordination of professionals to get the right solution?. What are the medications? And where is the tumour in his brain? Daddy’s started in the memory and processing but has got large very quickly. 

Thank you so much. I feel utterly helpless and heartbroken. Life is so cruel and it takes so much to accept it. Xx

My husband had a biopsy but even before that the surgeon was pretty sure what it was and said it was either stage 3/4. It turned out to be stage 4. The tumour is affecting my husbands right side. First symptom was a tremor in his right arm. He now can’t use his right arm/hand, very little movement in right leg/foot. After the biopsy he was put on steroids to reduce swelling but two weeks later he started having small seizures which affected his speech. He was put on anti-seizure drugs and after trialling different tablets and doses he is on Lamotrigine which has eliminated the seizures and struggle with speech.  We have been through some difficult times where he became angry and frustrated but is now on diazapam and this has made a difference.  The oncologist has said it could be just a matter of months without treatment, that was six weeks ago. He is definitely getting weaker and less mobile althoughwe take him out in his wheelchair.I know how hard it is for you watching your dad go through this. Our children are the same and my daughter is distraught that he will miss so much of his grandchildren growing up. For us two, although it is devastating we are more accepting as we have had 54 wonderful years together and many happy memories.  My heart goes out to you and your family, I know how traumatic and devastating this is for you. Xx