Rachy

[Lezpopz]

Hi my father's been diagnosed with a terminal stage 4 brain tumour he's had chemo and radiotherapy but sadly his treatments had to stop due to the effects of the steroids etc he's no longer mobile,he was told he had 14 months 19 months ago lm his full time carer and due to a fall due to having a seizure and now he's stuck in hospital because we can't get a care package it's heartbreaking l feel helpless and sad for him we l really want him home,thanks for listening

[Tansi75]

Hi Lezpopz

I'm sorry to read about your and your fathers circumstances.

I was diagnosed with a grade 4 GBM in May 2010, so know that it is possible to live beyond the current stated prognosis for a grade 4 GBM. Can I suggest you go to the Brain Tumour Charity's BRIAN APP, where I have placed various posts about my experiences and recommendations for living a longer and better life, on the BRIAN APP discussion board.

In the mean time it is important to stay positive and believe that you can both have a long life together. Has your father changed his diet to cut out all unnecessary sugar (which feeds cancer cells)? From my experience, diet is an important component to living beyond a prognosis. So, if you were advised that your father can eat/drink anything he wants, please ignore it and concentrate on him developing a healthy eating/drink diet, including cutting out alcohol.

The BRIAN APP will also give you access to advice and support.

[Lezpopz in reply to Tansi75]

Hi thank you so much for your advice it's really appreciated no l didn't know about sugar being really bad for him, l hope your doing well and keeping positive xx

[BobbyD123]

I truly feel for you. My treatment has stopped as further treatment considered to be more detrimental to quality of life. I now have another tumour at rear of brain in addition to the frontal lobe tumour that was removed and treated with Chemo and radiotherapy. Focus now is enjoying each day as best I can. The power of now. Yesterday has gone. Can’t do anything about that. Tomorrow is unknown so just try to live each day and enjoy as much as you can. Not easy. I know. But it does help. I wish you both good fortune on this horrible journey.

[Lezpopz]

Awww lovely lm so sorry to hear your news it really is the gift that just keeps giving isn't it,l find that our way to get through it is with laughter and jokes l like to try and make him smile every day usually l make silly songs up and sing to him we have a giggle,also our dogs are a massive help their so good with him ❤️ your absolutely right in your mind set,l hope you have people around you to make you smile hun and try and do as much of what makes you happy..your an incredibly amazing person l really wish you all the best Rachx

[kukiiit]

Hi Lezpopz.. so sorry to hear about your father. My husband has stage 4 glioblastoma. when he had recurrent edema, doc kept prescribing steroid and said there was no other options. we kept researching and came to know about amazing combo effect combination effect of CBD and CBG oil. we immediately ordered it from abroad and started giving him the combo. From day one, he became more alert, and it controlled his edema too. for 3 months he was completely on cbd and cbg 2 times a day and we could avoid steroid for those 3 months. after that, he suddenly developed aspiration pneumunia and had to be hospitalized and we had to stop the cbd. from then on, peg tube was inserted and he had to be fed through tube and it is still that way. but we are very particular about his diet ( no sugar and carbs) and all healthy stuff and supplement. he is doing fine. only he is unable to walk and just sits in wheel chair 2 times a day. doc gave us a very bleak picture but we never gave up and still fighting the disease every way possible. pls keep researching. there is always hope. keep faith dear. if you need to know anything specific pls don't hesitate to ask. always there for help.

[Lezpopz in reply to kukiiit]

Awww thank you so much for sharing your experience lm so happy you managed to stay clear of steroids for that time it really dos make a difference that combo sounds amazing lm always willing to try new things popz is in hospital still since his fall due to a seizure bless him we're hoping to get him into our local cottage hospital so that will be better for us to spend more time doing stuff lm gonna take his scooter so l can take him out in the town give him a break lm always thinking of ways to surprise him to keep him positive and strong he's so amazing he manages to get about a bit on his walker but l worry in case he fell so we have a wheelchair to,l to have experienced bleak news off the doctors but lve fought and fought to keep him going and keeping him positive because we don't want them to give up do we,sending love Rachx

[kukiiit in reply to Lezpopz]

That is heartening to know. You are doing your best and taking best possible care under the circumstance. take each day at a time and do whatever makes him happy and in a relaxed mood. May you be surrounded by beautiful energy🙌🙏

[Lezpopz in reply to kukiiit]

Awww thank you so much lm very blessed to have a big support network hope your surrounded by love ❤️ and positive energy to sending hugsxxx

[kukiiit in reply to Lezpopz]

lots of love, sunshine and a big hug 🤗 💖 more strength to you🙌

[Buffalolove]

My husband was diagnosed with a Gr 4 Glioblastoma wild type. He underwent a right craniotomy radiation and chemo. He will be starting his fourth round of TMZ for the 5 days. He too was on steroids and tried to taper down. Unfortunately his swelling increased so much with a midline shift that he needed IV infusions of avastin. He has had four and scheduled for more every 2 weeks. We are again tapering down the steroids which has made him very weak and extremely fatigued. I do believe that diet also plays an integral role. Any other advice would be immensely appreciated. My heart goes out to all of you!

[kukiiit in reply to Buffalolove]

dear, my husband too is on 2 weekly avastin and loumstine 6 weekly. diet is of paramount importance at this stage. avoid sugar and carbs. my hubby is on liquid diet now, given through a peg tube. The soup I make is loaded with veggies and one feed chicken soup is given. veggies include carrots, beetroots, indian gooseberry, squash, papaya, little yellow split pulses, about 10 pods of garlic,ginger, mint (if available). 2times I give him oats soup with protein supplements.

[kukiiit in reply to kukiiit]

also I give him curcumin supplements which is anti inflammatory and is a good immunity booster. also you can give him regular dose of vitamin C.

[Buffalolove in reply to kukiiit]

Thank you very kind. How is his energy level? So appreciate you sharing.

[kukiiit in reply to Buffalolove]

His energy level is ok. so is most of his parameters. thankfully. his GGTP is a bit on the higher side because of Lomustine.