Nell's mom update

nell · Regular Joined: 19 Aug 2007 Posts: 25 Location: Ohio

Hi all.
My mom's Aug. 23rd MRI showed inflamation at tumor bed and some flair which her Dr. said could be tumor cells. She had a decrease in mobility last week (uses a walker now, hard to stand up from sitting position) and Dr. thinks it is caused by the inflamation and not a response to steriods. So, her steroid was increased to 4mg every 6 hours. He said that upcoming radiation should take care of the flair indicated on the MRI if it is GBM cells. She starts Radiation next week (Wed.) at which point they may be able to reduce her steroid.
Mom said she did not want to take the Temodar, only wants radiation and asked if I would tell her Doc. That was hard to do! But I got through it and her Dr. , though not happy about the news, was polite about it.
I am sure some of you GBM care providers have had to tell Dr.s the wishes of your loved one, even if it goes against what you/dr. wants. It still feels all new to me so I just had to share.
Some of the emotional, physical things mom has to go through I never would have dreamed of. It's nice to know this place is here to talk about it so that I can provide her with the support she needs. Thanks for all the stories and well wishes and hope every one has shared. This forum really helps to provide relief from the emotional strain. Your all the best!
Nell

brainman · Posted: Sat Aug 25, 2007 1:19 pm Post subject: Re: Nell's mom update

Nell, thank you for sharing your story with the from. While each of our stories are different, there are also so many similarities. My mother died because of a GBM almost 9 years ago. She opted for no treatment at all except palliative care. Her cancer was already wide spread when it was diagnosed. I took one look at her MRI and new she was in serious trouble. Most of the left side of her brain and some of the right side lit up. Her mid-line was significantly shifted to the right.

Fortunately for my father and me, my mother expressed to the doctors her wish not to receive any treatment. The doctor said that it was probably for the best that at the most treatment would only add a few months to her life. He continued to say that those months would be very bad months and that he could understand her wanting to spend whatever time she had left in relative comfort with her family. Unfortunately, she died within 2 months of her diagnosis.

I guess what it is taking me so long to say is that treatment decision are so very personal. You (and me) as care providers just need to assure our loved ones that we will respect their wishes... regardless of how hard that is for us.

My thoughts and prayers continue to be with you and your mother.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

justAdad · New User Joined: 21 Aug 2007 Posts: 8

Hi nell,
brainman states it very eloquently. It is a personal choice which has to be respected.

But make sure your mother knows that the Temodar dosage given during radiation is relatively small. My son had no side effects at all other than MILD nausea a couple of times. This was easily controlled with Zofran. She could consider starting the Temodar and dropping it if the side effects are undesirable?! Just a thought.

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