Glioblastoma Grade 4

Wendy22

My 37 yo brother in law woke up Saturday 4/19/14 with vision issues in his right eye, as the day progressed it got worse, so my sister in law took him to the ER. The ER ran a CT scan that came back abnormal, so they did an MRI and that is when they found the tumor in the back left side of his brain. On 4/30/14 he had surgery only to discover he had 2 tumors growing in the same area, they were able to remove 95% of the tumors.

On 5/9/14 they met with the neurosurgeon that removed the tumors and he advised him he had Oligodendroglioma. So we thought, ok not great news but not the worst. They scheduled his first radiation treatment for 5/15/14. When they went to this appt yesterday, the radiation dr advised him that upon his review of the latest pathology report on 5/9/14 from a facility in San Francisco, his original diagnosis was incorrect and he has Glioblastoma Grade IV (the news we feared). How can the neurologist get this information so messed up. It's been a very emotional 24 hours.

My in laws have 3 small children all under the age of 6 yo and they were told yesterday that his life expectancy is 15-18 months. It is heart wrenching to get this news and to feel so helpless. We are people of faith, strong will and believe in miracles......praying that his "death" time line is indeed incorrect and that he'll surpass that time line for many years to come.

Anyone have any encouraging words of wisdom or your own experiences that beat the time line? 

Thanks,

Wendy

gmontelaro

Long-term survival with this disease is possible.

Wendy:

Take a look at the September 5, 2013 letter published in the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJMc1302145 as well as an article in a non-academic publication specific to The Ivy Center for Advanced Brain Tumor Treatment http://www.komonews.com/news/health/Doctor-brings-breakthrough-brain-cancer -treatment-to-Seattle-223645961.html using the FDA approved drug called Valcyte with a significant increase in survival time.  The study demonstrated that GBM (WHO grade IV) patients taking Valcyte on a continuous basis had a survival rate of 90% at 2 years vs. 27% and a median survival of 4.5 years. My partner is on Valcyte therepy and has tolerated it well with no side effects.

Given the methodology in the study and available research, Valcyte is not a cure, it has to be taken on a continuous basis like a maintenance drug. Duke University is working on a vaccine that appears to be 2 to 3 years out on a conservative curve. I believe Valcyte represents my partner's best chance at survival to meet that curve.

This is new research following a 5-year phase II trial and if you google "glioblastoma Valcyte" you will find a host of other articles.

Don't ever let anyone tell you or your brother that his "prognosis" is not good. No one can tell you that and no one should. GBM is a tough battle that has its casualties, but don't let despair rob you or your brother of your will to fight. Long-term survival with this disease is possible.

Gregory

Wendy22

gmontelaro said:

Long-term survival with this disease is possible.

Wendy:

Take a look at the September 5, 2013 letter published in the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJMc1302145 as well as an article in a non-academic publication specific to The Ivy Center for Advanced Brain Tumor Treatment http://www.komonews.com/news/health/Doctor-brings-breakthrough-brain-cancer -treatment-to-Seattle-223645961.html using the FDA approved drug called Valcyte with a significant increase in survival time.  The study demonstrated that GBM (WHO grade IV) patients taking Valcyte on a continuous basis had a survival rate of 90% at 2 years vs. 27% and a median survival of 4.5 years. My partner is on Valcyte therepy and has tolerated it well with no side effects.

Given the methodology in the study and available research, Valcyte is not a cure, it has to be taken on a continuous basis like a maintenance drug. Duke University is working on a vaccine that appears to be 2 to 3 years out on a conservative curve. I believe Valcyte represents my partner's best chance at survival to meet that curve.

This is new research following a 5-year phase II trial and if you google "glioblastoma Valcyte" you will find a host of other articles.

Don't ever let anyone tell you or your brother that his "prognosis" is not good. No one can tell you that and no one should. GBM is a tough battle that has its casualties, but don't let despair rob you or your brother of your will to fight. Long-term survival with this disease is possible.

Gregory

Thank you Gregory for your

Thank you Gregory for your encouraging words and information.

We are only entering this battle, but we are ready to fight.  

I will check into this information and make sure my brother in law knows every possible route available.

Many blessings to you and your partner.  

Wendy