Survival rates for Glioblastoma Multiforme Stage IV

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RE: Survival rates for Glioblastoma Multiforme Stage IV

by lynda7 on Fri Jun 15, 2018 12:31 AM

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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. 

josh

Josh, can I ask how old you are.  From what I am hearing from the doctors age plays a very important part in this disease.  My husband was diagnosed April 16, 2018 and most of the tumor removed on May 9, 2018.  He is 65.  Just curious.

Thank you.

Linda

RE: Survival rates for Glioblastoma Multiforme Stage IV

by Pkjnola on Sun May 19, 2019 04:31 AM

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On Jul 10, 2013 12:29 AM gbmhost wrote:

You can find up to date information on incidence, prevalence, survival times for a number of primary brain tumors from the Central  Brain Tumor Registry rin the United States

www.cbtrus.org "" target="_blank" rel="nofollow">http://www.cbtrus.org " target="_blank" rel="nofollow">www.cbtrus.org

i was diagnosed with a glioblastoma, temporal lobe into mid-brain-thalamus in 2003. Considered inoperable. I was started on Temodar with  radiation. VP16 added.  These two drugs for about 14months. Then a brief treatment with CPT-11 which I stopped on my own. No formal treatment since 2005.  Tumor has been unchanged on MRI almost 10 years.  I continue to have difficulty processsing thoughts. Very distractible, memory impairment, fatigue.  This has improved considerbly over the years. Waxes and wanes day by day, day in and day out.  I had terrible problems with balance and mobility until I had a VP shunt to drain cerebral spinal fluid from my brain (The tumor was blocking this).  I was using dexamethasone from day 1.  If I missed a dose, by noon and couldn't balance to go up stairs at home, had to crawl up. 

Of course, look at survival rates, but keep in mind that they are not YOUR survival rates.  Eleven to 14 months was the expected survival for me. That was 2003.  I think that the newer drugs, like Temodar, Avastin have increased this a few more months. 

I also feel that radiation has had long term effects on my cognitive abilities, and I was so fatigued that I slept 20+hours a day.  My muscles atropied so badly I could barely stand. I got into a Cancer Wellness program that involved excercise.  This, very difficult at the time, was very, very helpful, physically and emotionally.  Ten years October, 2013 and counting.

My mom was just diagnosed with an inoperable thalamic tumor as well. Can you please tell me more about your journey?

RE: Survival rates for Glioblastoma Multiforme Stage IV

by Buster00 on Thu May 23, 2019 04:54 PM

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On Jun 26, 2012 4:58 PM Luvingwife wrote:

Shucky

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,

Good luck,

Laurie V

www.caringbridge.org "" target="_blank" rel="nofollow">http://www.caringbridge.org " target="_blank" rel="nofollow">www.caringbridge.org /visit/johnv

 

What other treatment did he have pls ? I’ve been told months not years left now !!!!! X
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