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Glioblastoma Grade IV help

sreese6
Posts: 1
Joined: Oct 2013

Hello everyone, 

I have a childhood friend that has been fighting GBM IV since 2004, (I just found out about this within the last year.) and she's been through surgery, chemo, radiation, clinical trials, and investigational drugs. I'd like to help her as well, but I don't know much about the disease, side from what I've read on the internet. Any information, especially from personal experience, would be greatly appreciated! 

mccindy
Posts: 82
Joined: Jun 2013

It sounds like your friend has been going throug ha lot in the past several years.  GBM IV is the most malignant type of brain tumor.  I'm sure you seen online that prognosis is usually very poor (1-2 years with treatment) but there are definitely people out there who have beaten those odds and survived for many years.  Obviously your friend is one of them.  I have a grade II astrocytoma, had 99% removed in July and am now getting MRIs every three months to monitor for regrowth.  As GBMs tend to be much more aggressive, I'd venture to guess that your friend is also on a program of frequent MRI scans to monitor for growth or changes in the tumor.  As far as help, she's probably tired quite often, tumors and the treatments associated with them tend to have that effect.  Just be there for her emotionally, and offer her help with chores, shopping, etc, if she is open to that type of help. 

Edgoas
Posts: 2
Joined: Sep 2013

Hi, i read your post.

my mother was diagnose with a gbm 4, 3 months ago. Me has a caregiver, and has a sun, my advise is for you To ask to the family in what can you help, every case is unique but the family love is the same In all cases, family its  family.

 If the caregiver and your friend need help with the food you can start by searching the best diet for the patient, or just simply give the food that the person wants. 

i had searched for lots of diets. But my mother stopped heating, so now i give what she wants, and she started eating again.

Just support the patient, dont try To fight the disease.

each day its a new day, and its day by day.

good luck

 

mccindy
Posts: 82
Joined: Jun 2013

I think you have hit the heart of the issue.  Given the terminal outcome of GBMIV, when a person has gotten to the point where treatment is no longer feasible and they just want to be comfortable, remember to do whatever you can to make him or her happy and comfortable.  If she wants to eat Oreos by the box, let her.  Why not give her the chance to enjoy the foods she would like to eat, or do some silly things she might enjoy.  Sometimes a caregiver loses sight of the patient's needs by focusing on what might be what they consider to be "best" or "healthiest" for the patient, when the truth is, that making them happy or comfortable should be the main focus.

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