Celebrating with good news

jimssister · New User Joined: 23 Apr 2009 Posts: 7

Hi. My brother, Jim (GBM IV) (he's 58 y.o.), was in pretty rough shape the last time I posted, in April. He was dealing with a huge blood clot, hydrocephalus and acute weakness on his right side. Jim was not able to say much or sit up. The Dr. increased his steroids radically and, slowly, he started to improve. My sister and I flew to Maine at the beginning of May to see him and relieve my sister-in-law and Jim's friends from care giving for a week. My sister lives in Colorado and I live in California.

When we got there, Jim had had one infusion of Avastin and was able to talk but still had trouble finding his words. He only could walk with help and had lost a lot of weight. He improved a bit every day we were there. I got mixed up on his steroids and he missed some doses and went from 28mg down to 12mg a day for a couple of days. When we realized what had happened we talked to the doctor and since Jim had no ill effects, we kept him on the low dose and my SIL continued to reduce the steroids over the next few weeks. He is now on just a couple of mgs every other day!

So it looks like the avastin is doing something good. He gets an infusion every other week. Jim hasn't really been improving for a couple of weeks now but he hasn't gotten worse and that's great. His latest MRI shows a very slight reduction in his tumor (inoperable brain stem). A parietal lobe tumor was resected 12/30/2008. My SIL says the tumor looks really different now on the MRI. And the hydrocephalus has gone down.

Jim still has a lot of trouble finding the words he wants to say. It seems like that hasn't improved much. But his voice is stronger. Things are much better than 2 months ago when things were dire. His quality of life needs improvement and, hopefully, the avastin will continue to shrink the tumor and he will get stronger!
_________________
Stacie

brainman · Posted: Tue Jun 30, 2009 7:09 am Post subject: Re: Celebrating with good news

Stacie, thank you for the update about your brother's condition. I am glad for this wonderful news and that the Avastin is helping.

Quality of life seems to be the big issue with Jim. I suggest that you and the rest of his family think of yourselves as his "dream factory." Even in his weakened condition there are things that he still might enjoy. Find out what these are and to whatever you need to do to make those things a reality. Not only will he enjoy doing them but he will appreciate your loving effort to help his quality of life.

You, your sister, Jim's wife, and Jim are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
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jimssister · New User Joined: 23 Apr 2009 Posts: 7

Thank you, brainman. You are always so comforting.

You are in my thoughts and prayers as well.
_________________
Stacie

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