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Please help me. I feel so lost

silentblue
Posts: 4
Joined: Sep 2010

My 58 year old mother was diagnosed in October with limited stage SCLC. She went through chemo and radiation. She then had prophylactic radiation to her brain. She had no tumors there though.

Her last session was in February, and within the last 4 weeks she has completely become a different person. She's hallucinating, moody, cannot walk steady, has severe memory loss, cannot function by herself anymore on a day to day basis. I took her to the ER on Friday, and they finally had her admitted. She had seen her radiation oncologist one week prior, and he didn't have any answers for us, kept saying something about white matter..

She's had 2 MRI's a CT scan, chest x-ray, and they all come back normal. I still keep hearing the doctors bring up the white matter. They were going to do a spinal tap, but they cancelled it. They said why put her through anything invasive? But they have not given us any insight as to what may be causing this. She is just gone. I feel like her quality of life has been ripped out from under her. None of the tests show any tumors. They keep saying they've never seen anything like this, and want us to put her in a locked facility. I'm hesitant to take that leap without finding out what the heck is causing this first? I'm a realist and believe that someday the cancer will come back, but this is so unexpected. I feel like they're just giving up on her and don't know what to do next.

I work at the hospital she is in, and don't have time to be there every second, so I haven't even really met with all the doctors that have seen her. I want my mother back, and to know she may be like this permanently breaks my heart. She doesn't even realize she is in the hospital, sometimes she says she's in church, other times she thinks she's in a restaurant.

Anybody have any input? Any tests I can bring up to the doctors, maybe demand they do them? I really do want them to do the lumbar puncture, and possibly an EEG? Any input would be appreciated, as I'm at the end of my rope. I'm 32, have a baby and a full time job and I just want to have my mother be able to see her grandaughter and know who she is..

THanks so much,
Jackie

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I wonder because you work there at that hospital. If you are missing something? I would take my mom to another hospital for a second opinion. I am not sure but that is what I would do.

silentblue
Posts: 4
Joined: Sep 2010

I work in the finance department, so I don't know much about anything. There are no other hospitals in the area, we live an a very rural area.

Roc1463
Posts: 3
Joined: Mar 2010

Is your mother on any medication(s)? When I had rads to my brain I was given Dexamethasone 4mg. to keep me from getting headaches during the rads. The drug is a steriod which caused my knee joints to ache, toes to tingle, and finger tips to tingle.
I was glad to come off it. It's too bad there aren't any other hospitals there. Why not take her to a hospital in the closest city to you???? I would definitely look for a second opinion. I wish you the best.

stayingcalm's picture
stayingcalm
Posts: 654
Joined: Feb 2007

silentblue,
Ask the doctors about radiation necrosis, and if that is what it is, Avastin might help. Luck be with you!
stayingcalm

ddevil41
Posts: 11
Joined: Oct 2009

Hi silentblue, I'am so sorry to here about your mom. I lost mine 4 yrs ago, not to cancer (that's my problem now)I would encourage you to call cancer treatment centers of america. I go there now and they are wonderful. I have met many patients who were on the brink and now are back to them old selves.I mean many great stories of recovery (have yet to here anyone who was disappointed with the treatment). Good luck to you and your mom!
garycrews62@gmail.com

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