3rd line treatment

Hi Maia,

Sorry to hear your brother's MRI result wasn't good. My wife had her latest MRI last week so we're now nervously waiting to see the oncologist next week to see if there's growth and discuss any further treatment.

I guess you probably know that with GBM we don't have too many treatment options. You've already mentioned two of the main drug treatments which are primarily TMZ and then PCV or Avastin. The C in PCV actually stands for lomustine (it's also called CCNU) so if he's already been given this then I'm not sure what they might do next. PCV is also pretty tough on the body.

Sorry to not be more help but I'm sending best wishes and really hope he's given some options.

Chris

Hi Maia,  I don't know about 3rd line drugs either. My husband got Avastin as a sort of third line. He had surgery, then the usual radiotherapy and chemotherapy, and was to have a second operation, but this was changed to Avastin.   It seems some people can last a while with Avastin, but generally I think it helps only a few months if that. See what the doctors say. Each person is different and some on this forum took less drugs and get on better.  There are so many side effects. This is really tough, and just look out for your brother to be as comfortable and cared for as possible. Sending you a big hug. 

Hi Chris, thank you for your support. Unfortunately we are all in the same boat and it’s very important to have support, especially from people who knows what we are going through. 

Hi daybreak, 

thank you. I’m really sorry that you also have to go through this bad situation. What we can all do is hope that loving one does not suffer much, and take every day as a bliss. 

HI Maia

a warm welcome to the group. So sorry to hear about your brother. This is such a cruel journey for all involved.

I'm supporting my husband through his GBM journey so can relate to what you are going through. 

I don't have much to add to what Chris and Daybreak2 have said but is your brother taking any steroids just now? My husband declined all further chemo back in Jan 2021 (Lord, that seems like a lifetime ago now!)

HIs last MRI wasn't good and when we spoke to the oncologist at the end of February, my husband was experiencing weakness on the right hand side, his speech was awful and his general understanding/cognitive ability had declined. The oncologist commented on the amount of swelling around the tumours and prescribed steroids to reduce it. It took us 10 days to convince my husband to try them but they have made a significant difference. Yes, the improvement will be short lived. Six weeks down the line we can see the signs of decline creeping in again but they have improved his quality of life for now. Might be worth asking your brother's doctor.

Please make sure you are taking care of yourself here too. This is a gruelling and exhausting journey so please make sure your own wee batteries are charged.

This group is a safe and supportive space so please reach out anytime. You're not alone. And remember the helpline is also an option. The number is below.

For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

love n hugs

Wee Me xx

Hello everyone, 

just quick update. My brother is in terminal phase. He is receiving now palliative chemotherapy called Etoposside. Don’t know how much time we have left. It is what it is. I’m sure he will be surrounded with love and best care we can get.

bug hug for all of you

Thanks for updating us Maia. I really hope he gets on with the etoposide OK and there aren't too many side effects. 

I'll be thinking of you

Chris

Thank you