brain swelling but, no sign of tumor regrowth.

Hello everyone,

I've been a lilttle scared lately for my mother Kathleen.  She suddenly had trouble speaking and finding her words.  She is so frustrated.  The doctors did another MRI.  The MRI showed no signs of Cancer Tumor regrowth However, it did show that she had swelling and a mid line shift to the right.  Doctors said that this could explain her symptoms and put her back on Decadron.  With the decadron her speech improved again.  She seemed ok just little lapses in her words once in a while through the following weeks.  Kathy then took a trip out to Nevada to see grandkids graduate from high school. 
While she was there she suddenly started sluring her words and was not able to walk very well.  I'm becoming scared for her.  My sister quickly took her to the emergency room.  An MRI and CT scan were done and they ruled out stroke.  However, more swelling was found.  Mom was kept in ICU until the swelling could be stablized.  My mother has become even more depressed and even combative while she was there in the hospital. 
definitely a change in personallity.  The doctors stablized her and increased her decadron level again 4mg 4 times per day.  It seems to have her stable and she is able to go home to my sisters house.  How can the swelling be controlled?  It has been several months since the radiation treatment ( Feb).  What is causing it?  The doctors haven't told us.  She still on her chemo 5 days a month also.  Any of you have a similar experience.  This swelling is taking its toll on my mother.  I wish there was something more that could be done.  A surgery was suggested as a last resort.  i prefer she didn't have anymore surgeries.

thanks for listening friends

fixitmich

Scary as hell. So sorry. The swelling CAN be a delayed reaction to rad, or even to chemo rounds. Maybe if it's hydrocephalus pressure, they could put in a shunt. I know , I wouldn't want that either. It's one of those last resort things... really up to the patient, if s/he has the wherewithall to state a choice. As always, keep on the doctors!

Hoping it goes better ~
Sarah

mom of Andy, 26, dx GBM/PNET 1/09

 

On 7/1/2009 heart and soul wrote:

Scary as hell. So sorry. The swelling CAN be a delayed reaction to rad, or even to chemo rounds. Maybe if it's hydrocephalus pressure, they could put in a shunt. I know , I wouldn't want that either. It's one of those last resort things... really up to the patient, if s/he has the wherewithall to state a choice. As always, keep on the doctors!

Hoping it goes better ~
Sarah

mom of Andy, 26, dx GBM/PNET 1/09

Thanks for replying.  Yes, I think the doctor was talking about a shunt but said they wanted to wait and see if it could be controlled first.  I spoke with my mother Kathy just yesterday on the phone.  She sounded much better and said she was ready to come back home.  It made me feel better to hear her.  She better with the upped dose of Decadron.  Thanks again for being there for me Sarah.  Best wishes

fixitmich

my husband has a shunt for 2 years and it was no big deal for him.  I was thinking a shunt might help as I was reading her story as he had a midline shift as well.  It made a tremendous difference for him.  The only thing  that might bother your mom is that they shave the entire head to put the shunt in.

This link discusses causes of fluid build up on the brain. A shunt may in fact help the situation but if it is the result suggested by the following study it might not resolve anything. This study suggests adding a VEGF inhibitor (Avastin) to the treatment to counter fluid buildup.

VEGF inhibitors in the treatment of cerebral edema in patients with brain cancer

http://www.nature.com/nrclinonc/journal/v6/n4/full/nrclinonc

To the extent it is helpful to hear other stories...

It is not uncommon to have a brain swelling event.   My wife had one just as we were switching from Temodar to Avastin.     Avastin has helped to both control tumor growth and keep the swelling down.   She  has not had to go back on Decadron.

Pat

 

 

I posted a very similar message just a couple of weeks ago and I see some familiar names on the list of responders.  I want to thank them again for their input and reassurances.

I finished my radiation treatments in October.  A couple of months ago I suddenly had a severe increase in head pain, pressure and seizure activity but the MRI showed no evidence of tumor growth and only minor changes in edema.  My decadron dose was increased to 12 mg a day but it did not relieve my symptoms. I reached the point where I was having auras dozens of times of day and could no longer do any day to day tasks (clean house, cook, etc.) without fearing a seizure.  Clonazepam was added as a supplement to Dilantin to control my seizures, which finally let me regain some minimum normalcy in my life.

I met with my neuro-oncologist on Monday and he is confident that this is a reaction to radiation necrosis.  He said radiation side effects are expected for the 1st year after treatment, and he has seen necrosis develop as much as 7 years after treatment.  Although my edema apparently doesn't warrant a shunt, he said that the necrotic tissue can be an irritant and sometimes it will have to be surgically removed to improve symptoms.  But of course, doctors want to keep surgery as a last resort.  So, I now am taking 3 anti-seizure medications:  dilantin, clonazepam, and topamax in addition to decadron.  I'm also going to slowly try to decrease the decadron dose (your body adjusts to the higher dose so it is a long and difficult process to get off of it).

Anyway, I don't know if any of this information is helpful for your mother's situation.  I mainly wrote to let you know that she is not alone with the seemingly sudden setback.  I've only been on the new meds for a few days and I'm doing well.  I'm back to doing things around the house, running errands with my husband (obviously I still can't drive), and even ate at a crowded restaurant, which is something that I haven't done since I was diagnosed last July.  Hang in there.  I'm trying to learn not to assume the worst every time I have an apparent set back. It is a roller coaster.

Best wishes to you and your mother,

Sharon

Diagnosed:  Anaplastic Astrocytoma July 24, 2008                          

Location: Left frontal lobe, no resection due to location on motor center

Treatment:  7 weeks combined external beam radiation (5 days a week) with daily Temodar; followed by monthly 5/23 maintenance Temodar treatments.

 

 

Hi. This message board is wonderful. Thank you all for sharing your stories - it is so helpful. My Dad finished his radiation/chemo for glio 2 weeks ago. I noticed a few days ago that he was slurring his words and my Mom says he has been irritable and snapping at her, which is completely out of character for him. I thought he would be progressively feeling BETTER after the radiation worked it's way out of his body and hadn't considered he might be experiencing brain swelling. His decadron was d/c'd when his radiation teatments were finished. Thanks to all of you, we will pursue this with his Dr. His next diagnostic MRI isn't scheduled until July 20'th but we'll call his Dr tomorrow. Thanks everyone, Colleen

Hi there, my dad was suffering with edema due to radiotherapy and the steroids loose their efficiency after a while, try using boswellia, it is a natural anti inflammatory,

 

Hope your mothers ok, my dad has a gbm its awful!

 

Beth