hi all,
It's been an 11 months for us. My mother in law was diagnosed last year with gbm last august, went thru two resection surgeries in aug 16 and may 2017.
Prior to the first surgery, she got progressively worse very fast but surgery restored most of her mobility, she gained it back 3 months after surgery and was only slightly weak in left side of her body.
Had stable MRI till march this year and suspected regrowth. Had second total resection in May, she was left with left side neglect and loss of control of her left arm and leg, due to tumor growing deeper into the brain and surgery inevitably damaged some nerves which we have been told before surgery. Again, she bit by bit gained some control back, not greatest but she's able to walk with support.
However, 10 days ago she started to go backwards again, losing her left side control and her left side face started to become stiff too. A quick MRI was ordered we were told there's irregular enhancing white stuff along surgical bed, no solid tumor yet but signs of active gbm cells. We were devastated, how could this thing come back so quick and aggressive?
It's only been less than 2 months since we saw a perfect post operation clean scan. How can it come bsck so quick? She received no radiation after second op as she reached her max dose last year. Have been on 23/5 telezolomide/pcv cheno, finished only 1 cycle, due to start second this week. But is it still worth putting her thru this misery? Chemo makes her quick fatigue, can't eat and very sleepy/grumpy.
This is such a horrible disease. You are faced with decision making so many times in a short period of time. No doc can tell you which will definitely work best or which combination will produce optimal outcome, only theoretical and statistical predictions, and every choice you make is cruel in a way, brain surgery is scarey, immunotherapy ties your schedule to frequent clinic visits blood taken, sampling, re-injection of T cell etc, radiotherapy makes u misrrable and again fills your schedule for 1.5 months. Plus chemo. Looking back this 11 months, there was really little good memories we managed to create. Did we make right choice in pushing for agrresive treatments?
I know it is not time to regret because none of this was wished upon someone to begin with. We do not know how to rationalize this but maybe it's fate. Now. The bigger fear is how soon? What's next?
Given the fact that it came bsck so quick and mum had developed some symptoms only after 7 weeks or so. We are scared to even guess how this will progress at this pace. It's too much to take, especially for my wife, she doesn't even know what the first thing to do in the morning after she wakes up.
Had a talk with doc but wasn't given any guidance on prognosis, not even a brief one, was told to live every day to the fullest. But how?
I don't know whether knowing how long left will help us prepare emotionally and also other things we need to plan. But will appreciate it if anyone could share some experience? I know it is harsh to ask anyone here to recall this, my sympathy goes out to anyone that is affected by this terrible disease. But I really want to know, from clinically deteriatiing after treatment till the end, how long approximately? Will it continue so deteriate for everyone or it may stop going worse after a while? Any pattern?
Thanks a lot.
Regards.
Flattie
