Hello
Wife started the every 2 weeks avastin about Aug 08 and everything was fine except a bit fatigued and napped once a day for about 1 hr. Then in Oct gradually lost sight in right eye due to radiation damage. Then in Dec 08 4 days after 2 different sessions of avastin had size 10 headaches and rushed to ER. In both times the scan showed nothing. Docs prescribed 2 mg two times a day for the 4th and 5th days after avastin. Has had no headaches since then.
The lip seizure happened while she was ordering a few slices of pizza with me. She walked back to the table and said she thought she was having a stroke. She said it without moving her lips cause she couldnt. Put her into the car and on way to hospital she was all better. Total time from start to end of seizure was about 3 minutes. We called the NO at Duke and he said nothing to worry about and she has been on 500mg keppra 2 times a day since then with no other seizures.
Since about last Aug she was getting more fatigued and had to nap about 2 hrs a day and seemed to have some cognative defecits and could not think or concentrate as well. Maye it was at about 80% of pre 1/07 but was noticably falling since about the time of the seizure.
Last month we told the local NO about concerns and he recommended Provigil and so had the NO at Duke a few months before. It took her a couple of days to get the right dose. 200 mg made her totally spaced out and totally could not concentrate or remember where she was. She/we reduced it to 100mg a day once in the morning and now she functions just about normally and only takes a short 1/2 hr nap after breakfast.
I hope this information helps. If you have any more questions please ask.
Jed
On 7/9/2009
matt2281 wrote:
On 7/3/2009
jedjed wrote:
Hello
As the song goes... Some days are diamonds some days are stones. Wife was DX 1/07 and had resection and then the usual treatment radiation/Temodar now on Avastin every other week. She was on no treatment about a yr ago and a MRI showed something suspicious and then went back on Avastin and all MRI since then are stable. She had a mild lip seizure, first one ever, in April and is on Keppra 500 mg twice a day to prevent any other seizures and it is working.
As our local NO says and our docs at Duke say, GBM is not curable but is chronic much like arthritis and needs to be controlled.There are new drugs and chemos and treatments constantly being evolved. We need to take strength, hope and direction from the longer surviviors and look to their experiences for our inspiration and treatments.
Wife for last 6 weeks now takes Provigil 100mg /day for fatigue. It is great stuff and has dramatically improved her daily life with energy and memory.
Best wishes to you and husband and keep focused and looking for what is working for others.
Hello,
My mother was diagnosed 1/08 with GBM stage 4. Had surgery, 9 months of temodor, and radiation. stopped temodor due to allergic reaction. Tumor came back went on ccnu and showed no improvement. She is now on Avastin every two weeks. Last MRI showed no recurrent tumor and the multiple spots that had reoccured are now gone. Amazing! However the symptoms she is developing you would think are due to tumor growth. But there is no growth according to MRI two weeks ago. She has recently started slurring her speech a little (not too bad) and gets dizzy and fatigued when standing or walking just a little. She also might have had a siezure last week we took her to the ER. Her toungue came out of her mouth and speech started to slur bad for about 20 or so seconds. I wanted to know if your wife has developed anything un usual while taking avastin and also what was the lip seizure like. Also what was the Provigil presribed for? thanks for you help