My husband who is 51 has GBM and it is such a terrible disease

March, 2006  My husband was diagnosed after his craniotomy on 11/28/05, went through 30 radiation treatments and Temodar treatments.  He also had fluid aspirated a week ago from a cyst on his brain.  The doctors have all said, this one has moved very rapidly.  He sleeps alot now and is not eating very much at all.  I am calling hospice today.

Mayo clinic?  My husband's family wants to take him there for a 2nd opinion.  I don't think Mayo can do any more than Methodist Hospital in Indianpolis did for him.

April 18, 2006 My husband has GBM IV, which was diagnosed in 11/05, and is now taking Temodar again for 5 days only.  He is taking 240 mg. per day.  The first day he vomitted and was very ill, but then I gave him some meds. the Dr. prescribed along with the Temodar to keep him from vomitting.  He is having more weak spells and headaches than normal.  That's all I can tell you at this time.

April 22, 2006 Les has been doing well until the last 2 days.  He even mowed the back yard one day!  I think the sunshine has helped him alot.  He always has had seasonal depression since I have known him for 25 years.  The last few days he has been more tired and is taking longer naps.  He goes to the Chemo Oncologist next Tuesday and I want (I think) another MRI done to see what is going on.

May 4 He has lost vision & having expression aphasia?  His tumor is located in the frontal and the temporal lobe.  His diagnosis was 3-18 mos.  He was diagnosed in Nov. of 2005.  He had a craniotomy on 11/28/05 and had fluid aspiration on 2/28/05.  He also had 30 rounds of radiation and is currently on Temodar.  He experiences muscle weakness?  Boy, there are so many questions.  (Reply CIDP?)

May 5, 2006  My husband was very handy around the house but he gets very frustrated now since he can't remember how to do the simpliest things.  He calls himself an idiot and tells me he is stupid now.  Is your husband having weak spells?  I called them seizures at first, but I really think they are just muscle weakness caused by the decadron (steroids) he is taking.  He is on the Decadron to reduce the swelling of the tumor.  (Reply Memory Loss)

Godcanheal May 18, 2006
Hello all.  We just found out my husband's tumor has increased in size by 3/4" since February.  I didn't tell him though.  He is the type of person that will only get more depressed and he knows his cancer is terminal so why add fuel to the fire.  Take care.   Tammy
 
Sept 6, 2006
The doctors put my husband on a drug called "Flomax" which has helped with his frequent urination.   My husband had seizures or weak spells for 6-7 months has stopped having them now which is such a relief because I would have to hold him and lower him to the ground each time he had them.  I don't know why he stopped having them, but all I care about is that he no longer has them.  He has a good appetite. (Reply, "Does he have diabetes?") (Reply:  probably 2 things going on at the same time:  seizures/weak spells ... seizures can be from lack of oxygen ... the fatigue)
 
Sept 15 
My husband has GBM and is on his 9 month of this terrible monster.  He is getting very angry and this worries me. I also believe since he is aphasiatic he gets frustrated.    It's hard not to take the anger and rage personally, but please don't because it will only cause resentment and that's the worst thing you can do.  My husband has actually thrown chairs at me and locked me out of the house.  These are things that he would have never done in the past.  I find it's better to just ignore the things they say and not argue back even though that is very hard to do, but has worked for me.  (Reply CNS Poisoning)
 
November  My husband was diagnosed over a year ago with GBM and his eye sight is "filmy" as he describes it and his hands and feet are swelling.  Has anyone or anyone's loved one  in the group experienced this problem?  Thanks everyone.  Just grasping at straws!! (REPLY Advance affects of 2-butoxyethanol can do this.  Swelling could be a liver issue, or advanced CIDP)
 REPLY Nov 8, 2006:
Does your husband have more symptoms like CFIDS, CFS?
 
Then I would suspect other things are going on.
 
That swelling might mean concern for liver
 
Many med given say to check liver; and the chemical exposure that can cause many types of brain tumors ... also can harm the liver.  Ask the doctor to go over your husbands check list of symptoms to know whether or not to suspect 2-butoxyethanol exposure.   I shared here as well as other places in the past ... on this forum
(Suspect that soldiers especially in any war ... and even housewives are at risk)
 
And some help to consider.  This chemical also affects vision
 
 
   very sick  
 
Do you have 'this assortment' of CFIDS type symptoms?  *
 
 
Which of these symptoms do you have ... Share with your DOCTOR  for Dr
 
I would be interested in knowing any and all times he recalls 'flu symptoms'
EVEN just sniffling and farting ... to diarrhea especially
 
When blood work is done, also see if doctor will check manually
If this chemical, there is blood in urine many times AND something immature about red blood cells.  You do not get an accurate read for liver and white blood cells otherwise.  Look for some version of autoimmune hemolytic anemia for THE FATIGUE
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Jan 23, 2007
My husband who has had GBM4 for 14 months is now showing signs of swelling feet and hands.  The doctor says it is from the Decadron he is receiving.  His platelet counts have been low for the last two months and has not been able to receive his Temodar treatments.  Has anyone experienced these issues?  If so,  I would like to hear about it.  Thanks so much!
 
Jan 27 My husband has been on lasix for the swelling, but it doesn't seem to be working. Thursday his doctor's nurse called me at work and told me it's just a matter of time. His kidney's are starting to fail. I guess they can just tell by looking at a person. It's so so sad.
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REPLY:  I do see the pattern of ethylene glycol monobutyl ether exposure.  You haven't shared what type of work your husband was it.  It would also be good to know any serious 'flu' periods in his life.  What was he doing then?

Swelling anywhere and everywhere can be what exposure to 2-butoxyethanol does;
including headaches anywhere, brain tumors of many varieties
 
What I wrote to a brain surgeon - Brain tumors
 
Has your husband had ongoing, serious FATIGUE?
Ask doctors to look here for it ALL or AIHA + NHL 
 
Something similar is in Baby wipes  for goodness sake
 
Just re-contacted Roberto, an artistic painter
His doctors don't know what he is dealing with
Please pray for Roberto
 
Comments to Harold Ford, Jr  yesterday
 
Get copies of all his medical tests &/or any times of serious flu or constant sniffles and diarrhea  Are your finding this odd assortment of symptoms? http://www.valdezlink.com /pages/flunotflu.htm#is
Does he have a goodly assortment of symptoms?
Does he have fatigue?
 
I wish you could hear the cassette tape, "Back from the Brink"
If you privately e-mail me I will try to mail you a copy
It is a medically documented case of how glyconutrients helped someone who medical science had given up on.
 
& Stop any and all exposures to 2-butoxyethanol
in advance autoimmunity you notice yeast infections, you notice periodontal disease starting up.
 
With this chemical exposure  Organs being swollen and then organs like liver, kidneys, intestines, etc start shutting down. ...  that is part of the pattern. I think it is what is going on with SIDS.  Someone can be 10 days old, 10 months old, 10 years old, etc ... it happens more than is realized.
 
I am praying for your husband and will ask our church and special prayer warriors to pray, too.
 
Is there any way you can minimize medications?
Are there any that are not essential?