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Giloblastoma Iv Brain Swelling

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Caregiver
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searching4answers
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Subject: GiloBlastoma IV Brain Swelling
Date: 05/20/2008

My Aunt was DX with Giloblastoma on April 1st. She had surgery on April 3rd. They gave her 3-4 months with Radiation and Chemo.

She has been doing Radiation for 4 weeks. Last Thursday she took a turn for the worse and the headaches have started again. They stopped Radiation becasue she was week Monday and did a CT. She has massive brain swelling, but the Dr's are not sure why. They said that she should be took home and have Hospice called. My cousins meet with Hospice today and they are to start next week once she is moved.

The Dr's would not say how long but that it would not be months before the end.

Does anyone know what causes that much swelling. The tumors are not growing at this point but she is disoriented again due to the pressure.

Patient
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texasbelle5
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Subject: RE: GiloBlastoma IV Brain Swelling
Date: 05/20/2008

 

On 5/20/2008 searching4answers wrote:

My Aunt was DX with Giloblastoma on April 1st. She had surgery on April 3rd. They gave her 3-4 months with Radiation and Chemo.

She has been doing Radiation for 4 weeks. Last Thursday she took a turn for the worse and the headaches have started again. They stopped Radiation becasue she was week Monday and did a CT. She has massive brain swelling, but the Dr's are not sure why. They said that she should be took home and have Hospice called. My cousins meet with Hospice today and they are to start next week once she is moved.

The Dr's would not say how long but that it would not be months before the end.

Does anyone know what causes that much swelling. The tumors are not growing at this point but she is disoriented again due to the pressure.


 

It's usually an inflammatory responce to the rads. Dexamethasone is usually prescribed to reduce swelling and relieve pain. Though it can cause puffiness and make that tight fiting mask that strap you into that tight fit- most radiation oncologists do not like to prescribe it for that reason.

Talk to her Dr about steroids-pros and cons.

 

Good luck.

Subject: RE: GiloBlastoma IV Brain Swelling
Date: 05/20/2008

Dear Searching.  I think your Aunt's doctors are giving up on her way too fast.  Swelling during radiation is very common.  My husband had some problems with it too.  They were trying to reduce his Decadron during the radiation and that was a big mistake.  Radiation causes swelling all by itself.  So does the tumor.   They upped my husband's Decadron and it helped a great deal.  He also had a lot of swelling following radiation.  In his case the radiation and Temodar did nothing for the tumor - in fact the tumor progressed.  However, he was immediately started on Avastin and CPT-11 and he has had a wonderful response.  Here he is at 13 1/2 months since diagnosis and he is still going strong. 

Don't let them give up on your aunt so easily!!

Barb

Subject: RE: GiloBlastoma IV Brain Swelling
Date: 05/20/2008

Her doctors should know why:  surgery f/tumor = swelling; radiation tx f/tumor = swelling!  The docs here would not start radiation for my mom until 4-6wks post-op (because of swelling).   Assess her steroid dosage (my mom had 12-16mg/day post-op).  If she is already on a hefty dose, they need to reassess the imaging - are there any sources of bleeding in the brain?  Otherwise, radiation may need to hold-off until the swelling is under control.  The brain needs time to heal & get over the surgical/radiation insult its had!  With prayers,  Nikki

Mom Dx 10/07 Lt.parietal plum-size GBM resected; 6wks rad/Temodar; Gamma Knife 5/08; 2 rounds Temodar 2/08, 4/08

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