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View Full Version : SIL w/ Brain cancer need advise/support


Melissa C
04-23-2006, 03:16 PM
Hello,
I am new to this board. My 37 yr old SIL was dx with Stage 3 Breast Cancer in November 2004. She had a mascetomy, chemo and radiation. Her Drs misdianosed her for being HER negative. She was positive. At that time she had not received any Herceptin. By August 2005 she was having head/back pain. Her dr sent her in for scans. She had 9 tumors on her brain and cancer cells in her spinal fluid. My brother was in contact with drs at MD Anderson. She went there set up a treatment plan. That was when they found out she was HER2 positive. They immediatly started her on Herceptin along with chemo. She started having seizures so they had to add seizure meds along with everything else. The seizures are now under control. The last brain scan they did said the 9 original tumors are gone but she has developed 2 more. At Christmas she was able to walk with alittle assistance. Now she is unable to walk, move herself, or sit. She has lost her hearing and vision within the last 2 months. She is now losing her memory. She has hospice coming to their house twice a week.

I have researched and haven't found any info yet. My family knows it won't be long before the end. We just don't know what to expect. She still eats, drinks and takes her meds. A week ago today she was able to sit in her wheelchair now she can't even do that. I'm hoping someone here will be able to lead me in the right direction or maybe someone has been through what we are going thru.

Any help would be appreciated.

Melissa

Joe
04-23-2006, 06:38 PM
You may want to investigate the following clinical trial:

http://www.clinicaltrials.gov/ct/show/NCT00263588?order=2

Regards
Joe

janet/FL
04-23-2006, 06:42 PM
Melissa
I am so sorry to learn that your sister is not doing well. I have nothing to offer except my prayers for you, your sister and her family. It certainly seems like a missed diagnosis. I hope others might have further suggestions in the way of second opinions or treatment plans. At least Hospice is there to help. Is your sister still getting chemo? Was radiation ruled out?
Hugs
Janet

Melissa C
04-23-2006, 07:07 PM
They did radiation on her spine and I think they also did it on her brain. She was on Xeloda but they changed it due to her having seizures. I'm not sure which one she is on now. Since changing the chemo the swelling around one of the tumors has gone down. We don't understand why she lost her vision and her hearing. It seems like it happened so fast. Between December and now she went from walking, talking, seeing, hearing, laughing to bed ridden, deaf, blind and not making sense when she does talk. I did forward that info from Joe onto my brother for him to read. I keep hoping there is something we can do for her that will make it easier for us all.

karenann
04-26-2006, 10:48 AM
Melissa,

First, let me tell you what a wonderful person you are to your SIL. She and your brother are lucky to have someone like you to support and love them during this very hard time. Next, I wanted to tell you to post on the main her2 board, I think you will get a lot more responses that way. I do know there is one woman, on the board who is taking oral chemo (I am pretty sure it is oral) and it is helping her with her brain mets. I will try and find the post for you.

In the meantime, post on the main board and see what responses you get. There are a lot of women on this board living and living well with brain mets.

Hugs,
Karen