Severe Fatigue Recommendations?

Anyone have any recommendations for severe fatigue. My wife has GBM IV and has been doing really well the Avastin+ CPT-11 since late January. Over the past two weeks the fatigue factor has been severe and she has been sleeping up to 20+ hours of the day. The first three months of treatments weren't this bad. Anyone with suggestions to help with energy levels (meds, holistic health, etc..)? The good news is the MRI today still shows a 95% shrinkage since January 21st 08 with the regimen she is on.

Thanks,

EL 

I also,had a gbm -iv removed in nJan,,2008.

Without allmthe background and latest fatigtue,as of twomdeays ago,can't stand up or get up.Taken to Miwaukee VA Hospital .After the usual ,MRI etc,"MY ANSWER WAS  ,STEROIDS.GOT an infusion  and sent home .TODAY ,LIKE a new person.

CHECK IT OUT

El,

Very encouraging to hear your Wife is having a good response on the Avastin/CPT.  My 34 year old Sister started the same treatment 1 week ago and seems very fatigued also. Good for about 2 hours then exhausted.  Do you know what size of tumor your Wife had before the Avastin/CPT treatment?   

Hi,  My name is Jim R , and I was diagnosed with GBM on Feb. 26th 2004.  I have gone through surgery, radiation, and chemo, and it has been a challenge.  My tumor site is on the left side just above and beyond my ear.  This area is called the cognitive side of the brain which processes information.  I basically had to learn how to read and communicate again.  It was hard and took a lot of energy just to think.  I started reading comic books and funny papers so I would have pictures to help me relearn works, and their meanings.  I could read for about an hour, then I would have to rest for about an hour.  I still have trouble multitasking.  Right now, I am writing this without anything else going on in my home.  No TV, no radio, no questions or comments from my wife.  I can go through all of my mail, and respond when needed.  I don't have any cure for you or your wife, other than if your checkups are good, then when she needs to rest, let her rest.  The less activity, the better off.  It is hard for me to explain to people how much energy it takes to think.  I can read the newspaper, or walk for 3 miles, and be just as tired.  I rest frequently so that I can enjoy whatever we are planning to do.

Jim

On 5/13/2008 evancheryl wrote:

Anyone have any recommendations for severe fatigue. My wife has GBM IV and has been doing really well the Avastin+ CPT-11 since late January. Over the past two weeks the fatigue factor has been severe and she has been sleeping up to 20+ hours of the day. The first three months of treatments weren't this bad. Anyone with suggestions to help with energy levels (meds, holistic health, etc..)? The good news is the MRI today still shows a 95% shrinkage since January 21st 08 with the regimen she is on.

 

Thanks,

 

EL 

Oh my goodness, I can so easily relate to what you are experiencing.   they found a GBM tumor   June 07, tumor removed July 5th.   After radiation and chemo which ended September 11 (44 radiation treatments), the fatigue set in.   It is not anything that can be "fixed" with a nap, the mere thought of getting up and having a shower put me back to sleep.

I was sleeping 18 to 20 hours a day.   I told my doctors that I am so thankful to be alive but I am not LIVING.  I could not function.   Thanksgiving and Christmas are just a blur.   Two months ago they put me on ADDERALL 10mg extended release, just one a day.   It has done the trick.   The drug has awakened my brain.   Fatigue still is still a factor, some days I can go all day without even thinking of a nap.  J O Y.

Adderall was originally marketed and still is for Children with ADD, how it knows it should wake up a brain or calm one down is a mystery, one I am not questioning.  

I wish you good fortune with dealing with the fatigue factor.... have patience, we wish you HOPE and prayers

Frances