Need Any Positive Stories

I don't often write, but read nearly everyday.  We've tried to remain hopeful during these 8 months since my husband was first diagnosed with a gbm, but I feel I'm beginning to come apart.  He's the best husband, father I could ever have hoped for.  Our kids are young and I can't imagine my life without him.  I need hopeful stories to prop me up again.  He's receiving great care and he's such a strong person mentally and physically, but we all are too familiar with the devastation of this disease.  I feel helpless.  If anyone could send some positive messages that might restore some hope in us both.

Thank you and God bless everyone.

Kim,

There IS hope. I just sent you a private message. Good for you for reaching out when you need some support. We'll get through these scary times to better days!

Sarah

mom of Andy 26 dx GBM/PNET 1/09

     Keep a positive attitude-always.My wife diag in Nov. 06 and she just had her first "bad" mri in May 09. Went for 5 radiation treatments and then went to start chemo and all 4 new spots were GONE and chemo is on hold at this time....

My husband was diagnosed with GBM 2 years ago and every MRI since then has been stable. He is able to work, we just went on a wonderful vacation, and we look forward to the future. He is not as energetic as he once was, but he has plenty of strength to carry on his day to day activities, which is good enough. As far as I am concerned, there is no reason he can't continue this terrific progress indefinitely.

I agree with the other posters. Stay positive, stay strong and stay as active as you can. I just had a recurrence18 months after original diagnosis in Sept '07, but I remain active (as much as the month of rain in Boston allows me to be!) and optimistic. My docs are as well. I know not every day can be filled with hope--we all have down days on this rollercoaster ride, but keep up the good fight.

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.

 

Thank you to all for these uplifting messages.  It is helpful and inspirational to hear your stories of hope.  We are both feeling stronger today.

Thank you for helping us!

Kim:

 

My wife and I are both 52 and she was DX'd 2 years ago with GBM. At the time, she went through 2 surgeries, radiation, and Temodar. The cancer came back 3 weeks after. She went on Avastin (only) in Feb-08. Since then nothing but clear scans. She is getting ready to go back to work full time next month.

 The Avastin she takes every two weeks, and there is some side effects. BUT: She is still with us, and  doing OK.

 TWO YEARS !!! It does happen.

 

Chuck

 

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

 

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