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My mom has GBM 4. Need advice on treatment

Jordanhraye
Posts: 1
Joined: Oct 2013

hello everyone, 

Sorry for grammatical errors I am using a phone

my mom has had a brain tumor since 2002. She was 29 years old when wage was diagnosed. 

Every day or every day she has seizures that affect her left side or her body. Her tumor had stood the same for over 11 years! She had an astrocytoma.. Late december of 2012 my mom was told that she was growing a cyst and that it needed to be removed. She was afraid to do surgery and we tried alternative options that didn't work. She had the surgery this August and the cyst was successfully removed. As for her tumor, it was now a gbm grade 4! 

She had taken avastin chemotherapy last year and it didn't work.. So they decided not to treat her tumor with chemotheraphy. 

so 3 weeks ago she started with radiation. She didn't want to do it but doctors kept pressuring her. They also only gave her 5 years to live at most. 

 

I have had a lot of people tell me that alternative medicine would be best and not to do radiation because it only truly kills you. 

She is in her 3rd week of radiation and her her is falling. I see her cry because I know How much she loves her hair! (her hair is llong and beautiful up to her butt! She always got compliments Everywhere she went)!

i am afraid that I am not giving her the right information and feel regret if I guided her in the wrong direction treatment.

 

my mom is very youNG. She is only 41 and I am 20! I need your support and your advice!! Is radiation the wrong treatment? Does it work? What can I do to help her through this process? I need her very much and love her and would do anything for her. 

 

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

My sister did radiation for her anaplastic astrocytoma. We felt and still do that this was the scientific sound thing to do. Peer review journals supports that radiation will extend life. Alternative medicine is used by my sister to compliment traditional medicine not replace it. 

My sister is a brilliant mathematician and she has no deficits from her surgeries or radiation. 

Her hair is a hard subject. Some of it will never grow back. Her wigs are amazing and look real. People always want to know who is her hairstylist. 

My sister is a fighter and she wants to live.

J.

TJStansel
Posts: 1
Joined: Oct 2013

you woulnt believe how much your message changed my day. I hope your sister continues to do well. 

Thanks again~

Tish

mccindy
Posts: 82
Joined: Jun 2013

Hi Jordan,

I understand what you and your mom are going through.  These brain tumors are so devastating.  Radiation can be very difficult to go through, but doing it may extend her life and give her more time with you and the rest of your family. Having her hair fall out I"m sure is very painful for her.  I have long hair myself and I dread the day I have to choose to start radiation and it falls out.  That being said, I think the alternative of keeping my hair and dying sooner is worse.  I want to use every tool at my disposal to stay with my family and friends as long as I possibly can.  There are some lovely wigs out there, and your mom might have some fun trying them out and finding a new hairstyle.

Edgoas
Posts: 2
Joined: Sep 2013

Hi, im responding because i kind of feel the same.

im 33 years, And i have my mother and grandma only. and almost 3 months ago my mother was diagnose with gbm 4.

since that i have spended lots of hours reading about this disaese, and 2 weeks ago i found out that the best thing for you, is To follow what your heart tells you, my mother have done 6 weeks of radio and chemo after cirurgy, until 2 weeks ago, i was fighting this bloody disaese, but my mother told me that she dont want To fight anymore, she wants me To support her, and not to fight the disaese, althoug we had never talk about the disaese To each other.

this is my best advise To you.

 

at this moment im in the urgencys of the hospital, because a week after leaving the hospital, her body his very weak, with no white cells. I know that i have done, and still doing, the best that i can do.

psicologicaly my mother his very sick, fisically she dont move the right side of the body.

 

i cant say the future, but the present im doing everthing i can, for her feel the best she can due the circunstacis.

so do what your heart says, and trust the doctors, otherwise who can you trust???

a big hug, and strengh my friend caregiver

 

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