GBM Grade 4 treatment advice.

[ReDMaN_82]

Hello All,

My Mother in law recently started displaying strange behavious and traits. My wife and i forced he to go to the GP and get bloods and MRI done. Came back as a tumour the size of a mandarin in her frontal lobe.

On 22/10/18 she had surgery to remove the tumour and the pathology came back yesterday as grade 4.

I am well aware of the survival rates and life expectancy but more looking for advice on whether to treat with chemo, radiation, combination or not at all. I have read many articles and stories in the last few days where people have watched loves ones go through hell with chemo for very little benefit. Any advice or help would be greatly appreciated in such a horrible time.

Thanks

Matt

[Katekat]

Hi Matt,

I've just sent you an email with some information about our telephone support groups.

Here are a few more resources I think may be of interest:

• Understanding brain cancer - pdf book
• Making treatment decisions - podcast
• Understanding chemotherapy - pdf book
• Understanding radiation therapy - pdf book
• Emotions and cancer - pdf book
• Questions for your doctor - pdf book

Has anyone else had experience with brain cancer? Or perhaps with making difficult treatment decisions?

[Felix34]

Hello Matt,

Sorry to read about your mother in law

I am 46 and was diagnosed with a GBM June 2017 after having difficulties with my left side and then having a seizure. After the biopsy came back that it was a GBM I decided to have it debulked even though there was a high chance I would be paralysed on my left side. This was done 5 days after my seizure and I came out with a slight deficit, I could still walk but was with a limp and my arm was weaker. 

Once my wound healed from the craniotomy I started radiotherapy/chemotherapy, this took a lot out of me I was having focal seizures so they kept on putting my steroids up. By the end of radiotherapy I could hardly walk and they would actually meet me at the door and wheel me in.

I finished my radiotherapy course of 6 weeks and went to an appointment with my general physician, she took one look at me and said I wasn’t right and put me in for a MRI the next day.

At this point I was still having focal seizures and my eye sight was getting blurry.

The MRI showed the tumour had returned already in the same spot and was bigger, this was only 12 weeks after the first removal.

I had it removed again even though I was told I would definitely be paralysed but I came out the same as before. My general physician also put me on to a neurologist who was able to get my focal seizures under control. When I came out of hospital I went to my chemo oncologist as I wanted to start the next stage of treatment which is to increase the dose of chemotherapy. He didn’t want to as it had come back so quickly.

I changed back to an oncologist who I had when he was on leave.She listened to what I wanted and I started treatment once my wound had healed.

I have now done 15 cycles of this treatment, my body is tolerating it ok I do get tired and have a bit of nausea but it’s not to bad. My white blood cell count did drop last blood test but I was still able to take the chemo.

I have gone through a lot over the last 18 months and there is a lot I haven’t touched on as it will take all day to read. If you have any questions please don’t hesitate to ask I know what my fate is and I am able to discuss it openly. Some people can’t understand it but my theory is it’s no ones fault  I will be positive and get the most out of what time I have left.

Take care

Colin