Glio And Not Get Answers

Hello Everyone,

 

First and foremost I want to say that I know everyone is going through this and I'm so thankful for each and every day we have!  I can't imagine how anyone or any familyor friend deals with the agony of each day!

We found out in November that my husband at 42 at Glio blastoma, he's had perfect health, worked every day, did all he could do to live right and eat right.  Surgery was Dec 06, 2007 they could not remove it all due to location, up and out of the hospital in 2 days.  Treatments have went great 30 days of radiation and Temdodar, still worked 10 hour days.

Now on 6 months of 5 day cycles of Temodar, fatigue is all we see.

The tumor is still golf ball size in the center of his head.

My question is we keep going back and we have no answser.

They keep saying that he's getting the standard care of treatment, standard protcol.

Is this enough???? We've never seen the same doctor is 6 months.

We have no idea what to do?  Are we doing all we can!

He's life is EVERYTHING and I can't imagine if we've wasted one day for

STANDARD treatment.... If anyone can say yes this is all you can do I could live with this, but I really feel that there is so much more!

 

You need to get to a specialist; neurooncologist and a hospital or center that focuses on brain tumor research. It sounds like you have done what most have so far. If your husband's tumor has not grown, that is very good, but I'm sure you need answers to what to do next. Sorry to hear that you have been left with no answers. It is very frustrating. The best thing I did was change my care to UCLA. I can't believe the difference in care and follow through.

My best to your husband and you. Be proactive!

Denise

PS. This sight has a wealth of information from others and is very helpful. Read as many posts as you can and hopefully you'll get some direction.

Unfortunately they are right about the standard care for GBM. Go to a place with a great reputation( of course if you are able to). I went to the University of Pennsylvania with my father, he had surgery 6/06 typical care followed, all went great.  In April 07 they said that he might have some tumor regrowth or its from the radiation, they do not know. Every 2 months after that we had an MRI and the doctor said that he was happy with the results. The last MRI was on 9/13/07 and was told to come back in 2 months. One week later my father went to the ER and 2 months later he was gone. That is all I have to say about our great doctors.

Ask  alot of questions and look into Duke, one of the best there is. Look for someone who is more aggresive with the treatments than the typical Rad and Temodar, I do not believe that those do the job. Good luck

Joe

I have been a patient at Duke for nearly three years. I too have GBM. I am 37 yoa (female). I had my first recurrence in Fe 2008. I am taking 250 mg of Temodar on 5 of 23 in combination with Avastin (infusion every two weeks). After one month of treatment my tumor was less than half the size. I was traveling to Duke every two weeks to get the Avastin but once the insurance paid for it (without complaint) I get the infusions at my local oncologist's office. Duke coordinates my care completely and I have been nothing but happy. They have so many treatment options. My local oncologist was just going to do radiation alone and told me I had 9-18 months. Duke is Hope, they don't give timelines and have so much to offer. I have not doubt that I did the right thing by going there.

 

On 4/27/2008 frs1971 wrote:

I have been a patient at Duke for nearly three years. I too have GBM. I am 37 yoa (female). I had my first recurrence in Fe 2008. I am taking 250 mg of Temodar on 5 of 23 in combination with Avastin (infusion every two weeks). After one month of treatment my tumor was less than half the size. I was traveling to Duke every two weeks to get the Avastin but once the insurance paid for it (without complaint) I get the infusions at my local oncologist's office. Duke coordinates my care completely and I have been nothing but happy. They have so many treatment options. My local oncologist was just going to do radiation alone and told me I had 9-18 months. Duke is Hope, they don't give timelines and have so much to offer. I have not doubt that I did the right thing by going there.

 

My husband who is 63 years old and is great health was airlifted to Seattle Harborview after showing symtems of seizures  on 11-7-07 It took 4 days to diagnois that it was a tumor-we were referred to the Uof WA and scheduled him for surgery. They took most of it out leaving one small finger shaped tumor cell. When we went back for pathology in two weeks and given the diagnoise of the Glio tumor. Also he only had 1 year. 

We are so fortunate in our area to have a cancer treatment center. They are connected with several Cancer Centers in Seattle including the UW. He received 30 radiation treatments and temador at the same time. He had a week off and went through 3 course of the temodor 5 days on and 15 off.  It was time for an MRI.

The doctors reading it here could not tell if the things that showed were tumors, inflamation or scar tissue.The local doctor wanted to wait another month and have another MRI done. Well my daughter is a nurse who works for an internest and she knows how to get things done. She sent the new MRI over to be checked by the UW and their tumor board.

She just got a call and the tumor board suggest that his protacal be changed and he should start Avastin. There reasoning was that my husband has no other medical problems, he has a good quaility of life now. He only has a small upset stomach during the chemo and wants to sleep alot. This only last 3 days and he is just like himself until he has chemo again.He has small headaches once in awhile. And then he goes back on his steroids for 3-4 days then They go away.He has only lost 15 pound through all of this. 

We are taking this as good news since so many people have good things to say about the Avastin.

My point is that is looks like we are very lucky to have a daughter in the med field to be her Dad's advocate. And I also think the physicians do not know everything. Too many people have outlived their time given that I know personaly. Every patient is different and in different health. 

We are blessed to be Christians and that keeps his attitude and mine ok most days.

regards Eulah