Glioblastoma- grade 4 brain cancer

Hi StephenI9

I really didn’t like the steroids, although I appreciate what they did for me in reducing swelling and headaches. I found I couldn’t sleep on them and hated putting weight on. 
radio and chemo are ok so far, I finish my 6weeks in 8 days time.
chemo makes me nauseous but it is manageable by timing anti sickness with eating meals. 
radiotheraphy has been fine so far but I have been getting more and more tired as the weeks pass. Also by the end of week 5 I am losing most of my hair that side of my head and my scar is very sore. I’d liken it to sunburn personally. I feel quite lucky as I think symptoms of radiotherapy can be worse than I’ve experienced and some people end up back on steroids which I’ve managed to resist going back on them so far. 
how did your meeting go with the consultant? 
best wishes. 

I have recently been diagnosed with the same, i too looked online and it has scared the pants off me to the extent i only see the outcome not the in between, so so so many unknowns. seeing this message gives me warmth when it feels each stage is a knock back

HI

one thing I've learned from my journey supporting my husband who was diagnosed with GBM4 in Sept 2020 is to take this journey one step at a time and focus on the facts and not the what ifs. Steer clear of Dr Google too - he's scary!

We were told my husband had 12-15 months back in Sept 2020 and that news was devastating for all of us. However, two years down the line, he is still physically very fit. He is a fitness fanatic and a marathon runner and fortunately is still able to run. He's entered in the London marathon in Oct and is aiming for a personal best of under 3:15:00. This morning he ran a PB in a local half marathon of 1:26:12.  I  have no idea how he is still capable of doing this to be honest,

Most of his symptoms are cognitive- a bit like early stage dementia- and that brings its own challenges.

Everyone here is unique. Every tumour is unique so there is no one size fits all here.

Stay strong. Stay positive each step of the way.

love n hugs

Wee Me xx

off the steroids now which is great and starting to feel normal again, head is still sore but the stitches have now been removed. the meeting went ok but still haven't had the results back from m the lab so is delaying thinks at the moment,

i start chemo and radiotherapy within 3 weeks. the consultant did say they still thing it a grade 4 but I wont take it until we have seen the results

Bless you, I have found the whole thing quite normal until 10 weeks lter at the end of my first week of radiology then I had a melt as all emotions seemed to land. Google is a scary place so avoid as we are all so different in how we react and cope with treatment. 

standard treatment is not as affective due to meth status of the tumour so opted for a trial. 

following surgery my research doctor asked me how I was feeling and I said as best as I had been so far and she said that the best way to think is that once resection has been done you are in theory desiese free unless something shows. 

whilst this does not change what the future hold I found it very reassuring so hope this helps

next week is the start of week 3 of treatment for me so fingers crossed it stays that way. 

I never had steroids my tumour was 18mm and resection was success with a greater margin taken so hopefully this may help a bit. 

I truly wish you well and thank you for responding. MacMillan was there in an instant when I needed them on a chat last Sunday and supported me with counselling via bupa fully funded. The support is amazing 

Thank you for this ️

My husband. Was 55. When. He. Was. Downsied.  Gmb4  frontlope  mgmt meylation.  He's.  Due. To start  chemo cycle 3 on 29th. Feb   scan was 19th  Feb   results on Wed.   So I'm.hoping. he's long time.  Sivival.  With this cancer 

Hope you get good news on Wednesday. But my consultant gave me three months and wanted to keep me in hospital or hospice. At the time only 59 so when they said this and stopped all the chemo etc, I fought with all my energy to get me home even it was to die. With help from family and now c they all got me home with some care. That was over four years ago, walk with a stick very wobbly, cook and clean for myself. I’ve got the care to twice a day for a hour slot, only to come in and have a coffee and chat. My son had twin’s when I was in hospital. The my only disappointed with is loss of memory for the 15+ years. I am sure my children and my lovey grandkids keep giving me a reason to say up yours to the consultant. 
Hopefully you will get a reason to help you fight this horrible disease. I have no memory of what I felt like, name of brain trauma, hospital stay for three months. The only memory is be fighting with my x to get me home. Since the wife has left, I’ve moved into a lovely one bed flat. My x tells people she knows some old B    Me, about why she left. I think i outlived the three months. 
Like I said yes with all the pills etc hope you get good outcomes to help you fight this condition. 
if you’re wanting to be a friend on this site let me know. So perhaps we can beat this.

Yeah.  We can be friends.  You.  Messager

Mt. Husband. Was  only thew days  from os op.  In Sept  17 Sunday Sept. Out Tuesday. Night.  Did you.just have. One. Op