My husband has a gbm grade 4

Hi,

I'm no expert just a wife of someone with GBM4, so I'll help with what I know. 

Graham only had a biopsy as tumour too close to vital mechanics and that's how we got diagnosis. 

How old is your dad? Any reason why he doesn't want treatment? I fully appreciate some people don't want treatment. What I've learnt from this is that no one knows how they will respond/react until they're in this situation. The life expectancy you were given with treatment is the usual prognosis. 

Do you have contact numbers for your dad's oncologist/nurses? Might be worth speaking to them when you can. 

Reading other people's stories is a great comfort, although we'd all prefer less of us were going through it.

Take care and stay safe.

Lisa xx

Hi Lisa 

Dad is 65, he doesn’t do the whole being ill thing (typical male) and has always said that when his time is up he just wants to go...so had kinda made his mind up before we saw any further specialists...the oncologist said that radiotherapy might make him worse due to the position of the Tumor. We are just riding it out he has has some truly amazing days and weeks since he’s been home but also some bad one (not health wise as such but snappy and nasty which he doesn’t mean)

hope you managed a lovely family Easter 

xxx

Hi Heatherlee, 

I was just having a read through the forum and know exactly what you are going through. 

My mum went into work and collapsed so I brought her back to the UK from Ireland as she didn't have any other family or friends over there to help. She was diagnosed with this condition in the middle of March and that it was inoperable with a life expectancy of weeks because she was already very underweight and frail. 

I have been looking after her at home as palliative care with my partner and soon to be 2 year old daughter under the same roof restricted due to the virus. It has been extremely tough and heart breaking to watch her deteriorate so rapidly. 

At first it was a few muddled words here and there which she knew she was doing and was always complaining of severe headaches followed by sickness. Gradually her mobility worsened and her eyesight seemed to be lacking at times all the while her headaches still present. 

She's now at a point where she is hooked up to constant Morphine and Midazolam to calm her as she was in a state of constant agitation by either crying, anger or delirious. She's stopped eating and drinking because she's constantly sleeping and I don't think it will be too long now before she can finally rest in peace. 

I feel for you and I can imagine so many mixed emotions must be running through your head but try and make the most of the good days that your husband has. 

. X. 

Hi my name is Rich, my dad was diagnosed with a gliobastoma 1.5 months ago.

We have read that fasting can have effects on cancer and there is some evidence to support that it slows cancer cell growth. I was hoping someone might have some information or advice on using fasting as a tool in conjunction with other therapies. My dad goes for his first round of chemo and radiation soon and we are curious about fasting before during or after these treatments.

Does anyone know how fasts should be used in conjunction with chemo and radiation? Curious about when it should be done and duration of fasts? Water only? No water?

Thanks to anyone who can help

Hi, I'm so sorry to read all of your sad news. My husband was diagnosed with GBM wildtype August 2019. He had surgery to remove most of the tumour then 6 weeks chemoradiation. He's just finished the 5th lot of chemo. So we are a little bit further down the road than some of you but we haven't really discussed prognosis or what might happen as my husband doesn't want to know about anything he had no control over. Although I understand this is his way of dealing with his diagnosis I find it hard not to be able to talk things through and ask questions of his oncology nurse. He's trying to reduce his steroids down and is now on 3mg but I've noticed he's much more tired and is struggling with words more.  He's keen to get off steroids altogether but I'm scared these symptoms will get  worse if he does. I'm hoping this forum will be a help, just having shared experiences and being able to share concerns with people who understand how difficult it is to live with this awful cancer. 

.

Hi LH66, 

I know you posted this a while ago but I thought  I would reply as I can relate to your fears and thoughts of life without your husband.  I'm terrified of the thought of what lies ahead for us and the thought of life without him is unbearable. I've tried to not dwell on these thoughts but sometimes they crash down like a tidal wave and overwhelm me. 

Like you we have dropped into a kind of normal, he was diagnosed last August, but it's a different life where small achievements like jobs in the garden or house being done are a win. He is trying to work towards being well enough to return to work but it's hard to see how at this moment in time and the balance between supporting what he wants and remaining realistic is difficult sometimes. 

Having to delay your husband's next round of chemo must be worrying for you. I hope that can be sorted soon for him. I.wisb you both well and hoie you're staying safe at this strange and difficult time x

Hi Rich,

I just lost my mother almost 2 months ago. I had similar question about fasting; however, I found my mother was extremely tire and dehydrated after radiation/chemo. Either you do fasting alone, by all means, no other treatments, which of course it feels like we're giving up.

Hi,

Thank you for replying. 

Things going well here atm, Graham still physically very strong and I still test his memory daily!!!! Short term memory still main issue. He's now alternating between 1mg and half mg of steroids, speak nt wk to chemo nurses with the hope of reducing more. Taking a mix of herbal remedies atm whilst off treatment, def got nothing to lose. Hope to have scan, first since diagnosis end of May. 

How are things we you and your husband? 

Take care and stay safe x

Hi, 

It's good to hear that Graham is doing well af the minute. He must be doing well to be able to reduce his steroids down to 0.5mg. Has it made any noticable difference to how he is?

My husband has been on steroids since August last year. Most of the time on 4mg although at first it was much higher. He's recently dtopped to 3mg and its affected his word finding.  He is hoping to reduce again soon. He is doing ok otherwise which is great. 

Has your husband finished his chemo completely now? 

Mine us having chemo every 28 days still. His 6th lot will be next week. I think they will do a scan after that dose., Covid-19 permitting. 

It sounds like your doing an amazing job keeping your husband fit and well with his exercise etc. Keep up the good work and look after yourself too xx