GBM IV

I recently went through multiple test within the last month and half.  My tumor was removed about 3 weeks ago and am preparing to do radiation and Temdor starting tomorrow.  I am also part of a test study for MUSC in Charleston, SC that will use my white bood cells and will be mixed with the tumor removed from right above my ear area.  I am not to technical with the name of the area given by doctors.  I was given 4 months to 16 months and that is included with treatment given by them.  I find it hard to believe that life is that short especially when I have no other problems excepting eatting all the time due the steriods given to me.  I have in the last 5 days given up the steroids due to the weight gain and the only reason I was given them was due to swelling around the tumor.  The tumor has been removed and I weaned off using the steroids.  I am not familiar with the process for which I am begin, but I GOD will lead and guide me according to his plan. 

Thanks for posting.  There are a lot of stories of people who have lived with GBM longer than the average that they give everyone.  As you'll find with most of these forums, there are lots of people who have survived longer than that and that every tumor is so different.  It's what is stressful because no two tumors act the same but it's also hopeful but you never know.  My husband was diagnosed with stage 3 but the doctor now feels that it's GMB 4.  He had his surgery in July and finished the chemo and radiation in November.  He's done two cycles of the Temodar and now they are going to add in Avastin, since the tumor doesn't seem to be responding to the Temodar.  Hopefully these forums will give you hope and everyone here is really great at answering questions about their experiences. Enjoy the day and keep fighting!

On Feb 06, 2013 6:46 PM NotImpossible wrote:

I recently went through multiple test within the last month and half.  My tumor was removed about 3 weeks ago and am preparing to do radiation and Temdor starting tomorrow.  I am also part of a test study for MUSC in Charleston, SC that will use my white bood cells and will be mixed with the tumor removed from right above my ear area.  I am not to technical with the name of the area given by doctors.  I was given 4 months to 16 months and that is included with treatment given by them.  I find it hard to believe that life is that short especially when I have no other problems excepting eatting all the time due the steriods given to me.  I have in the last 5 days given up the steroids due to the weight gain and the only reason I was given them was due to swelling around the tumor.  The tumor has been removed and I weaned off using the steroids.  I am not familiar with the process for which I am begin, but I GOD will lead and guide me according to his plan. 

Hi Notimpossible,

A year ago the 25th of this month I was diagnosed with GBM IV, given the same odds as you, decided to ignore them and focus on getting better.  I had six weeks of proton radiation and seven months of chemo, three of them at the 400 mg level, pretty goddamn brutal.  To date the MRIs I've had since beginning treatment have shown no sign of recurrence, my strength and stamina are returning, and when the docs go from telling me  "when it comes back" to "IF it comes back", I take that as a positive sign.

You are NOT a statistic.  You are a person.  You are still very early in the treatment process.  Good luck!

On Feb 06, 2013 10:39 PM Randy1958 wrote:

On Feb 06, 2013 6:46 PM NotImpossible wrote:

I recently went through multiple test within the last month and half.  My tumor was removed about 3 weeks ago and am preparing to do radiation and Temdor starting tomorrow.  I am also part of a test study for MUSC in Charleston, SC that will use my white bood cells and will be mixed with the tumor removed from right above my ear area.  I am not to technical with the name of the area given by doctors.  I was given 4 months to 16 months and that is included with treatment given by them.  I find it hard to believe that life is that short especially when I have no other problems excepting eatting all the time due the steriods given to me.  I have in the last 5 days given up the steroids due to the weight gain and the only reason I was given them was due to swelling around the tumor.  The tumor has been removed and I weaned off using the steroids.  I am not familiar with the process for which I am begin, but I GOD will lead and guide me according to his plan. 

Hi Notimpossible,

A year ago the 25th of this month I was diagnosed with GBM IV, given the same odds as you, decided to ignore them and focus on getting better.  I had six weeks of proton radiation and seven months of chemo, three of them at the 400 mg level, pretty goddamn brutal.  To date the MRIs I've had since beginning treatment have shown no sign of recurrence, my strength and stamina are returning, and when the docs go from telling me  "when it comes back" to "IF it comes back", I take that as a positive sign.

You are NOT a statistic.  You are a person.  You are still very early in the treatment process.  Good luck!

I was dx 12/27/12 started the chemop and radiation. I think the  docs at oncology have been crappy and not very supportive. I was given a referral to ucsf to  continue as the small town I live in is inadequate to address gbm... Im excited that I will be treated at a major brain center than where I was.. I live by hearing the statistics being beat. We need to stick together adn cheer each other on.. We shall all beat this! There the docs dont knw shit! was a comment made by a four year survivor in Oregon..

On Feb 06, 2013 11:18 PM Careg wrote:

On Feb 06, 2013 10:39 PM Randy1958 wrote:

On Feb 06, 2013 6:46 PM NotImpossible wrote:

I recently went through multiple test within the last month and half.  My tumor was removed about 3 weeks ago and am preparing to do radiation and Temdor starting tomorrow.  I am also part of a test study for MUSC in Charleston, SC that will use my white bood cells and will be mixed with the tumor removed from right above my ear area.  I am not to technical with the name of the area given by doctors.  I was given 4 months to 16 months and that is included with treatment given by them.  I find it hard to believe that life is that short especially when I have no other problems excepting eatting all the time due the steriods given to me.  I have in the last 5 days given up the steroids due to the weight gain and the only reason I was given them was due to swelling around the tumor.  The tumor has been removed and I weaned off using the steroids.  I am not familiar with the process for which I am begin, but I GOD will lead and guide me according to his plan. 

Hi Notimpossible,

A year ago the 25th of this month I was diagnosed with GBM IV, given the same odds as you, decided to ignore them and focus on getting better.  I had six weeks of proton radiation and seven months of chemo, three of them at the 400 mg level, pretty goddamn brutal.  To date the MRIs I've had since beginning treatment have shown no sign of recurrence, my strength and stamina are returning, and when the docs go from telling me  "when it comes back" to "IF it comes back", I take that as a positive sign.

You are NOT a statistic.  You are a person.  You are still very early in the treatment process.  Good luck!

I was dx 12/27/12 started the chemop and radiation. I think the  docs at oncology have been crappy and not very supportive. I was given a referral to ucsf to  continue as the small town I live in is inadequate to address gbm... Im excited that I will be treated at a major brain center than where I was.. I live by hearing the statistics being beat. We need to stick together adn cheer each other on.. We shall all beat this! There the docs dont knw shit! was a comment made by a four year survivor in Oregon..

I know of a twelve year survivor in Oregon -- her name is Cheryl Broyles, you can find her on Facebook -- she was diagnosed with GBM June of 2000 and is still here despite everything, and she is a wonderful, articulate spokeswoman for the cancer community.  She goes down to UCSF every two months for MRIs.  She even wrote a book about her cancer trial, "Life's Mountains".  It's available through your local bookseller or Amazon.  Highly recommended.  And we both have something in common, namely confounding the docs.

It sounds like you are going to be receiving dendritic cell immunotherapy.  That is FANTASTIC!  Not everyone is a candidate for vaccine therapy.  There are VERY GOOD statistics for patients who receive the type of treatment you are going to be receiving.  Most patients do not have any side effects from the treatments either.  MUSC is a terrific facility.  It sounds like things are in your favor.  So, chin up;  I am wishing you the very best!!! 

Robin from NY

I lost my husband 10-16-11 from GBM IV. He was first diagnosed 9-8-10 & lived 13 months. He had a swcond surgery 8-9-11 & the surgeon put in 6 Gliadel Wafers & he did not tell us he was going to do that. After 5 days they started to dissolve as we were told they would. He developed a horrible headache & went to the hospital again for 3 days & back again 8-31-11 & was never home again. He had all the side effects listed & ended up having a tube inserted in his brain to drain all the infection. He developed Meningitis, Ventriculitis (infection in the ventriculars of the brain. He went to Hospice 10-11-11 & passed on 10-16-11. My only advice I can give you is if the Doctor told you to slowly go off of the steroids I hope he knows what he's doing. When Bill came home from the 2nd surgery they wrote down on paper for him to reduce the steroids & after a couple days he couldn't walk. They admitted they reduced them too soon. Just 1 mistake after another. Hospice was WONDERFUL to him & us. I wish you luck & my prayers are with you & your family. My husband was 63. February 13, 2013 he would have been 65 & on Medicare like me. God has a plan for all of us & it's usually a good thing we don't know what he has planned for us, but I LOVE Jesus & go to Sunday School & Church all the time. My church family has been wonderful to me-so caring.

Long term survival depends on many factors.  The younger you are, the better your chances.  The more tumor removed, the better your chances.  The healthier you were prior to diagnosis, the better your chances.  The better you came out of surgery in regards to physical/mental deficits, the better your chances.

Survival statistics are unfortunately quite accurate for the majority of the population, but do not apply to the entire population as evidenced by long term survivors on this forum and others.  That's where ATTITUDE comes into play.  Believe in God, believe in yourself, be a fighter and just keep going as best you can.  Normalcy is important...try as best you can to get back to your normal routine before diagnosis.  You CAN be the exception to the statistics.  There are others who are, why not you.