After Brain Surgery

The doctors give my husband a year to live.  The were not able to remove all of his tumor.  He has a glioblastoma which is the same type of cancer that Ted Kennedy had.  Has anyone had to watch a family members decline with cancer of this kind?

[rumpled]

I had a father and an uncle in this situation.

Not the same type of tumor, but they were not able to remove everything and they passed within 6 months.

I don't know if you have any support or support groups around, but I would advise joining that, even if it is online. If there are any books or music and the like that make him happy, I would suggest having that around so you can play or read that. Think about the life.

If there is a visiting nurse service or the like, speak to them about the best way to set up a home for care (tools, devices, cleaning, etc.) if he is going to stay home. Also think about taking care of the caregivers, as they need a break too to stay fresh and strong.

Is there something you wanted to know specifically?

[rumpled]

bump

[Maryse]

My mom was diagnosed with glioblastoma on February 4, 2010 and they gave her 3 months to 1 year.  She's been on tamador since the beginning now 1 week on 1 week off.  She had 30 radiation treatments.  On March 18th she had a ruptured colon we almost lost her and that's what really put her physically down.  She never got her strength back.  When she was first diagnosed the tumor was 7cm big, after the radiation it was 4.5cm. In June she had a grand Mal seizure where they started her on Keppra. In August she started taking Avistan infusions and it took a couple of weeks but all of a sudden she started being more alert and the tumor shrank to  3.3cm.  She's been having the infusions every three weeks.  what's hurting her the most now is the decadron a steroid which is to help prevent swelling it's causing more damage than the tumor.  Her skin tears and bruises at the slightest touch.  She bleeds more and she has no strength what so ever and the doctor said that long term use is what causes all these side effects.  The nurse said that it's unheard of to stop taking it because there is no room for the brain to expand like other parts of the body there's more space for swelling.  
I hope we can keep in touch!!!!

[rumpled]

Thank you for coming here to tell your story and sorry to hear about your mom.
Even if they cannot take away the steroids, what about cutting the dose a bit - it sounds like the side effects are really creating a lot more symptoms but maybe even a slight reduction may help.

Decadron can last up to 50 hours, so dosing daily or more, so when you dose, you "stack" doses, if that makes sense. The steroid is probably thinning her blood too.

[mini824]

My nepew, 2 years and 8 months had a brain tumor surgery 5 months ago. It was at the bottom of the brain and was found as a cancer. But no indication of growth in the MRI taken after 3 months after surgery. He is blind and bed ridden after surgery and screams (it's difficult to hear) every 2 3 mintes and has only a few minutes sleep. He is being fed with a spoon and swallows. He looks healthy for the age. I am wondering why he screams (no tears) and when can he open his eyes and want to know whether he recovers from this condition.Doctor has removed all the sick cells. Please answer me.  

[rumpled]

We are patients, not specialists - so we are in the same boat as you.

Was your nephew able to speak before surgery? What is his prognosis? Even though all the tumor was removed, there still may be residual brain damage (such as the blindness etc) so he may not be normal - the doctors should have run tests or will run tests, ordered therapy etc.

There is not enough information given to really answer or research well. It is a sad situation. The doctors on his case, the social workers etc should be consulted as they will know more.