One patient with glioblastoma still alive nine years later
by shucky on Tue Jun 26, 2012 03:42 PM
I had surgery in October 2011 for GBM and surgeon could not get it all due to fingers penetrating the brain. I did radiation and am taking Temodar monthly but feel that I am losing ability to process thoughts, mobility and balance. Has anyone experienced this? Drs indicate 12 to 18 months survival time but anyone have differing experiences.
by kim55 on Tue Jun 26, 2012 04:18 PM
My husband was diagnosed with GBM in November 2010. He did'nt have any type of surgery, just a biopsy due to the tumor location. He did have chemo and radiation at Johns Hopkins Brain Tumor Center. We came home after 7 weeks of treatments with Temodar. He took that for 2 months and had to stop due to low platelet counts. He takes 4 mgs. of decadron daily for swelling, plus alot of other meds, but he has terrible muscle atrophy due to the steroids. He can't walk without a walker and usually uses a wheel chair. His prognosis was 1 year to 1 year and 6 months. We are going on 21 months in July, and his MRIs have shown no change in the tumor at all. I see Gods hands working on my husband daily. This is a long, and bumpy journey, and as his caregiver, it's the hardest thing I've ever done in my life. Please hang in there and God Bless you.
by Luvingwife on Tue Jun 26, 2012 04:58 PM
There are so many variables with this disease that I expect you will get all sorts of answers re: prognosis. You did not mention where your tumor was located, but that can be one of the variables. Your age and general health is also an important variable. My dh was diag in May 2004 and was told 1-2 years prognosis. He is still doing well, still drives, walks / jogs in the neighborhood and sometimes you would never know he has GBM IV. He is sometimes confused, and has short term memory loss. He naps alot and has lost some strength and balance. After he finished radx and 6 months of Temodar he went a long while with no symptoms and no deficits. When he had recurrence in 2006 the oncologist said there was no other treatments available. Then we went to a neuro oncologist and dh has since had several different treatments.
Keep asking questions,
by kat54 on Tue Jun 26, 2012 06:24 PM
Shucky, I'm sorry you find yourself here in BT World. I first landed here in 1993 with GBMIV. I have had two surgeries, radiation and stereotactic radiosurgery - same as gamma knife but no chemo. When I was first diagnosed chemo didn't cross the brain blood barrier so I decided to hold that off as last resort. so far I haven't needed it. my full story is on yasg.com under bios. you will also find long time survivor stories at virtual trials.com . my tumor was located in my right temporal lobe. I felt just like you in the beginning. be patient it gets better. remember your brain has been sliced, diced, fried and marinated in a short period of time. It will need time to heal. I slept about 20 hrs a day regularly as mental fatigue was terrible. after my second surgery I was totally blind. I drive now, play golf generally have a good quality of life even though I was never able to return to work. Please tell your Dr.s toread the survivor stories and to quit giving such terrible statistics.
Feel free to contact me anytime I wish you the very best and send prayers for strength and patience. Kathleen
by Ducks-n-Row on Tue Jun 26, 2012 08:16 PM
Your reactions to the temodar are normal might I say. Kinda feels like you are walking in a "fog". Everything seems a little "off". This is my guess as I took Temodar for 2 years, 5/23day cycle. As time passes your body adust some what. Just enjoy every minute of your life. Never loose sight of HOPE!
Dx NOv 07....No regrets
by EvaJudge on Sat Jun 30, 2012 06:29 PM
I am 33 years old and recently separated from my husband with two young children. I was diagnosed with brain caner GM stage 4 in March 2010. I know your feelings are crushed and its a long battle. I have faith in you! You can do it!! I have been living with it for two years. If I can do it. You can do it!
by pearsonjosh19 on Sun Jul 01, 2012 07:02 AM
July 13th will be my one year since surgery. They were able to get 85% of the tumor. I had full regrowth in January. I was put on avastin and a 21/28 day cycle 140 mg of temador. It was a baseball size tumor, it is now smaller than a grape. I feel great, I am fully active. I work out 3-4 days a week for at least 2 hrs. I mnt bike and walk the other days of the week. My only limitations is driving due to the tumor taking about 50% vision in my right eye, and I no long drink due to reaction of booze and meds (long story). Dex origional atrophied a lot of muscle mass from me. But my hard work in the gym has restored me to pre-GBM strength. We all know the final outcome of this disease, But im gonna fight it all the way.
by ASurvivor on Mon Jul 02, 2012 02:40 PM
As time goes on, listening to your body will tell you (more than anyone else) what medication works for you and which does not. I like to relax and meditate and pray whenever I first take a new medicine. If I notice any new side affect, I discuss it with my doctor and we adjust things as needed. My toughest period was the first year. My ability to focus and multitask has returned. I hope that yours does too. Each month of living contains so many joys for us to enjoy. Stay positive.BillDx 8/3/2009
by mlopez on Thu Oct 25, 2012 03:59 AM
On Jul 01, 2012 7:02 AM pearsonjosh19 wrote: July 13th will be my one year since surgery. They were able to get 85% of the tumor. I had full regrowth in January. I was put on avastin and a 21/28 day cycle 140 mg of temador. It was a baseball size tumor, it is now smaller than a grape. I feel great, I am fully active. I work out 3-4 days a week for at least 2 hrs. I mnt bike and walk the other days of the week. My only limitations is driving due to the tumor taking about 50% vision in my right eye, and I no long drink due to reaction of booze and meds (long story). Dex origional atrophied a lot of muscle mass from me. But my hard work in the gym has restored me to pre-GBM strength. We all know the final outcome of this disease, But im gonna fight it all the way.
On Jul 01, 2012 7:02 AM pearsonjosh19 wrote:
My husband has been diagnosed with GBM (left temporal lobe) in July 2012 and 1 week later went thru surgery and 2/3rds remains. Prior to the surgery, he had a headache for approximately 3 weeks, but, we thought it was a migraine headache as he has had them in the past. NEVER did we think it was a tumor because he is fit, exercises, eats healthy, very active with a postitive attitude about life. Over all he was a VERY happy person and a GREAT guy. Everyone that knows him will attest to this. But once diagnosed, it has been a complete nightmare and that nightmare just gets worse. He completed chemo and radiation and 3 weeks later after his MRI follow up, today we were told that the tumor continues to grow. Trying to stay positive but it is very hard. The oncologist recommended avastin and I am hoping/praying that the final outcome won't be the timeframe given by the doctors.
by jpearson472 on Thu Oct 25, 2012 07:21 AM
mlopez, avastin has been great for me. I get scans every 6 weeks and the last few have been all good. It has shrunk my tumor from a baseball with tenicles to not showing a thing on the mri. The only problem with avastin is that it doesnt work for everyone. There is a new avastin that is in the process of being approved that is supposed to be more effective for those that the present avastin doesnt work for. My only side effect I get from avastin and also from temador is fatigue. But I only usually sleep between 4 and 6 hrs at night and then try gto get a mid afternoon nap. If you have any questions, ask away
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