One patient with glioblastoma still alive nine years later
by twilliams on Sat Jul 03, 2010 01:09 AM
Hi My brother Greg has stage 4 brain cancer. He's in the hospital now . I was with him last week at his house and he was in so much pain and all he did was sleep. Yesterday he was supposed to have his third avastin treatment . They did an MRI first because he was so weak. they found he had too much fluid around his brain so they did surgery on him to put a drainage tube in, Well they checked his spinal fluid and found cancer cells. I'm so scared for him , The Dr wants to talk to my mom and dad along with my sister in law. Is there any hope?
by Sherylrjr on Sat Jul 03, 2010 12:57 PM
I am sorry to hear about your brother. I m not familiar with cancer cells in the spinial fluid. I thought that brain cancer cells can't travel out side of the brain due to the blood brain barrier. My thoughts are the brain cancer is the secondary site...meaning the cancer was in another part of his body and metastises to the brain.
I wish I could give you some solid information this.
I hope you will be able to sit in on the doctors meeting with your other family members. I know this will help you with the anxiety you are feeling.
Always here to listen!
God Bless You and Your Family!
Son 34 dx Mar 08 AA progression Mar 10
by onemorehour on Sat Jul 03, 2010 02:02 PM
We went through this with my husband (also named Greg) and it happened to another friend's husband. I met here here on CC. Our nuero-oncologist explained that it is one way for the cancer to spread. They continued treating him with Avastin, so that if the CSF allows cells to get to another area of the brain, it will not develop into a mass as quickly as it might have without the Avastin. Our NO said it is pretty common for there to be cancer cells in the CSF when there are 2 or more tumor sites. GBM can spread to the spinal cord. It's extremely rare for it to spread to other areas, like the liver, etc.
I'm sorry you are going through this. Take it one day at a time.
by twilliams on Sat Jul 03, 2010 02:41 PM
When that happened with your Greg did the avastin help? My Greg seems to be sleeping a lot he's not in pain since they are removing all the fluid around the brain. My sisters and brothers want to get him into MD Anderson. We are all in Orlando or close to it and they have one here. We are so confused.
by thinkingofdad on Sat Jul 03, 2010 06:23 PM
Oh how scary, very scary. I am so sorry for both Gregs! This is just a horrible disease. I feel so bad hearing of the horrible pain people can be in from cancer. If there was no pain, my God it might be easier for these dear people!
Dr. Hensen in Seattle's Ivy Institute researched and produced an article of a man who gave a kidney to someone, and that man had GBM, well 5 years later the kidney acceptor developed GBM only in her kidney. It was very fascinating indeed, and proved that GBM does spread if given time, but people just don't live long enough for it to develop. Very scary indeed.
I wonder if they could treat the spinal fluid cells w/a different chemo?
So sorry... please keep us updated,
Tina J. - d/o Multifocal GBM warrior!
by onemorehour on Sat Jul 03, 2010 08:41 PM
My Greg passed away this March, 18 months after he was diagnosed with GBM. I still come to visit here and answer when i can share experience because I hope that I can help others through this. I also to read about others because I have come to care so much for people here. Sometimes I feel terrible because my husband's life is over so I can't really offer a big success story.
I do think that Avastin slowed the progression of his disease. He was stable from October '08 until November of '09 when he had a recurrence. The original tumor regrew, and he also had a second spot on his cerebellum. Then they started treating him with Avastin. It was at that point that the NO told me that if it is in more than one spot, it is almost certainly in the CSF. Does your brother have a single tumor site, or more than one? Has he had a recurrence? Usually Temodar is replaced with Avastin when the tumor has regrown.
MD Anderson is a great place. It's so important to be at a major center. I wish you all the very best. He is lucky to have a dedicated family who is looking out for him.
Sleeping a lot is pretty normal. I'm glad to hear he is not experiencing pain. You have come to the right place- the people here are amazingly helpful and I hope that you find all of the answers you need. My very best advice is to get through one single day at a time and gather as much info as you can. Sending love and hope your way.
by twilliams on Sat Jul 03, 2010 09:39 PM
Your Greg sounds like mine. He's had for about 18 months as well. The Dr says it's just a matter of time now. They're not going to any more avastin treatments.
It seems like we all look for the big success story I know I always would go to the old threads and find them. I wish we had one to tell.
My Greg has 3 spots now and the third one is in the back of his head, He had 2 surgeries a trail drug xL184 then only 2 treatments of avastin.
We are flying his daughter in to be with him and still trying to get a hold of his son.
by mrs_fritz on Sat Jul 03, 2010 09:58 PM
I am so sorry to hear about Greg's progression. I can see that he has fought a very hard fight...taken advantage of every thing available and he is so blessed to have such a loving family. I pray for peace and strength for you both.
by montalv on Thu Oct 21, 2010 03:36 AM
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