The use of Avastin for Glioblastoma grade IV

My husband has been on Avastin for about 15 months... for the first 12 months with Temodar and the last 3 months with CPT-11 and Carboplatin.  I think Avastin has worked well for him with the side effects being more chemo and steroid related vs. Avastin.  Although many side effects are hard to tell what specific drug is causing it as many of them overlap.

My dad was diagnosed in Oct of 2010 (17 months ago) He started avastin in December and just had his first MRI the first week in March. It showed the tumor shrinking and his doctors at columbia were very happy with the result thus far. He gets a bit fatigued, but goes to work for a few hours a day and walks 3-4 miles every other day. I'd like to comment that I don't think it's fair to make generalizations like "eventually everything stops working" I truly believe that if there's anything all of us can do it's to keep on hoping. Don't be someone who takes that away from others no matter how realistic you may think you're being.

All the best to everyone fighting, and the people who love them.

Would never judge how someone deals. No one wants to be here.

Hi there!  I hope Avastin works for your mom.

Unfortunately, my husband was one of the majority who did not respond to it.  He only had 2 cycles of it and it did not stop tumor growth.  The enhancing tumor was stable, but the non-enhancing tumor grew during the period.  He had miserable quality of life on it.

As I said earlier, I hope it works for your mom.  It seems like most of the others who posted had good results with it and I just wanted to add some balance to the discussion.

God bless,  Sally

Hi,

My husband completed 7 weeks of radiation initially (dx 9/11), and has been on Avastin for 6 months, along with Temodar. After the first few treatments, he said he could actually feel a burst of energy.

He tolerates the Avastin well, with no side effects that we've noticed, and he is feeling pretty good, aside from fatigue. However, I think that all of the treatment he's been through is responsible for the fatigue, rather than the Avastin.

He just had his second MRI since completing radiation, and we'll have the results on Friday, and know a little bit better how it's all working.  My fingers are crossed.  Ha - talk about hope...

The crazy thing  - or should I say ONE of the crazy things :) is that what works for one doesn't work for another.  It's not like strep throat where everyone is treated the same and it works.  I am 51 years old and 4 and 1/2 years out (October 200 ).  Started with temodar, doc wasn't sure if the scan was scar tissue or the "junk" trying to come back.  At that time, I started avastin and cpt-11 -- every two weeks.

My doc is super aggressive and doesn't plan for me to ever be off the drugs unless I choose to.  In December of 2011 she dropped the cpt-11.  (I am now 12 weeks between treatments.  The longest she "lets" her patients go is 14 weeks.)  Had scan Monday - no change.  Thank you Jesus.  I used to want them to say it's gone.  Now I am thrilled with no change.

I have absolutely no reason why it's working for me and doesn't for some others.  The only things I've changed in my lifestye is NO STRESS.  I do not put myself into situations that I know will bother me, but since I was diagnosed nothing bothers me!  I am just thankful for every day -- in fact that's the first thing I say every day.  I do drink lots of green tea and really, really limit my sugars.  I rarely have any kind of dessert.  (However, yesterday I found out a Dairy Queen Dilly Bar only has 5 g sugar -- same as a pack of nabs!!!  BUT, I'll still plan to only have one every couple of weeks.)

Anyway, I must be completely honest.  I rarely come to this message board unless I've had a scan.  (See above - no stress.)  For whatever reason (and the only reason I have stress) is when I come here and find so many sad stories.  I've learned to google whatever it is I want to know and it usually takes me to a post here, but I don't have to wade through so much sadness.  Survivor's guilt does put a lot of stress on me because I have NO idea why I'm here and others aren't.

WAY TOO LONG, but I just wanted people to know that sometimes the numbers are wrong.  When I was diagnosed the numbers said 6 - 12 months.  Well, 53 months later I'm still here.  What will the chemo do to me in the future?  That's the least of my problems.  I'm just so happy to have each day I do. 

Donna

The crazy thing  - or should I say ONE of the crazy things :) is that what works for one doesn't work for another.  It's not like strep throat where everyone is treated the same and it works.  I am 51 years old and 4 and 1/2 years out (October 2007).  Started with temodar, doc wasn't sure if the scan was scar tissue or the "junk" trying to come back.  At that time, I started avastin and cpt-11 -- every two weeks.

My doc is super aggressive and doesn't plan for me to ever be off the drugs unless I choose to.  In December of 2011 she dropped the cpt-11.  (I am now 12 weeks between treatments.  The longest she "lets" her patients go is 14 weeks.)  Had scan Monday - no change.  Thank you Jesus.  I used to want them to say it's gone.  Now I am thrilled with no change.

I have absolutely no reason why it's working for me and doesn't for some others.  The only things I've changed in my lifestye is NO STRESS.  I do not put myself into situations that I know will bother me, but since I was diagnosed nothing bothers me!  I am just thankful for every day -- in fact that's the first thing I say every day.  I do drink lots of green tea and really, really limit my sugars.  I rarely have any kind of dessert.  (However, yesterday I found out a Dairy Queen Dilly Bar only has 5 g sugar -- same as a pack of nabs!!!  BUT, I'll still plan to only have one every couple of weeks.)

Anyway, I must be completely honest.  I rarely come to this message board unless I've had a scan.  (See above - no stress.)  For whatever reason (and the only reason I have stress) is when I come here and find so many sad stories.  I've learned to google whatever it is I want to know and it usually takes me to a post here, but I don't have to wade through so much sadness.  Survivor's guilt does put a lot of stress on me because I have NO idea why I'm here and others aren't.

WAY TOO LONG, but I just wanted people to know that sometimes the numbers are wrong.  When I was diagnosed the numbers said 6 - 12 months.  Well, 53 months later I'm still here.  What will the chemo do to me in the future?  That's the least of my problems.  I'm just so happy to have each day I do. 

Donna

Wow your positive attitude sounds like my mother. She was 61 when she was diagnosed. Through out all of this she says she can only do today and she keeps doing and doing. She appreciates everyone and everything.

I feel that her forced retirement has taken the stress out of her life. 

Ironically she has always been a healthy vegetarian but the steroid has definately increased her appetite and her cravings for ice cream. Every time we go to the Dr. she has gained more weight I keep thinking that I rather she be gaining then losing the weight at this point.

Thank you for posting !!

We are thankful for the time we have and try not to look at the numbers. But I felt like I was saying my good byes to her at the end of January and now with this new treatment I feel like I'm getting her back again.

We go next Wednesday for the next MRI - and we will know if the tumor has stayed the same - I'm thinking it has from what I'm seeing as far as her improvement.

Thank you Donna and Good luck to you !!

Kristin

Hello

I believe the radiation worked for my mom for a few months.

I'm not sure if the Temodar with the Radiation and then alone kept the tumor from progressing as well.

The steroid has definately been my mom's energy and with the tapering we are seeing some welcome fatigue. Lots of sleepless nights full of cooking, organizing, sewing and recently knitting.

Good luck on Friday I know the Dr. always tells us not to be to concerned with the MRI but there is something about being able to see what you are dealing with.

Thank you

Kristin