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recurrence....what to do next???

Posts: 1
Joined: Aug 2011

My husband has just been told that his tumor is growing after he has been stable for 9 months after surgery (did not remove much), radiation and temodar, and 5 day temodar every three weeks. He has been active and doing fairly well. Now his doctor is recommending switching to avastin. I would like to hear of other's experiences on this drug. I am also wondering what anyone knows about the clinical trials of medi-575. He may be eligible for this but we have to explore it and decide....this is the stuff that feels overwhelming...would love some help...
Thank you!!

Posts: 358
Joined: Aug 2009

My husband was treated swith avastin for a GBM. Initial results were good, shrank the tumor significantly. Unfortunately the tumor found its way around the drug and started to grow again. One of the side effects was hemorrages. He did have two severe nose bleeds, one which resulted in a ER trip to get under control. Overall, he did tolerate the avastin well while he was on it.

momsworld's picture
Posts: 135
Joined: May 2010

Hi there, my daughter has been on Avastin since October 2010. She has tolerated it very well. We have recently decided to stop the Avastin and the other chemos. Her doctor has told us that the Avastin is not a cure for brain cancer but it does hold the tumor at bay for awhile. I have heard good things and bad things about Avastin, but ALL medicines have good and bad things about them. Her 1st Avastin treatment took 1 1/2 hours to administer, they started off slow to make sure that she didn't have any kind of reaction. After that, each treatment took 1/2 hour. She did take a high dose of Zofran before each treatment just in case. Good luck, I know decisions like this are very hard. Go with your heart.

alutiiqmom's picture
Posts: 256
Joined: Jun 2011

My 18 year old takes Avastin and Irinatecan, two times a month. She seems to tolerate them both ok. the drug that makes her the most sick is Temodar.
I am hopeful that these meds will cure my daughter.
Did you stop the meds because the tumor was not present? Did your daughter have AA3? Where do you receive treatment?
We go to Seattle children's. We are on our fourth month of our drug regimine. Blessings to all of you.

Posts: 30
Joined: Jun 2011

I am so sorry to hear that your daughter has a brain tumor. This is not a life that anyone would want for their child and it must be very difficult for you. Does she have a GBM?

Did your daughter do the 5/28 Temodar schedule while she was on the Avastin treatment? My husband is about to start the two and I have been worried about how he will tolerate the treatment. I guess no one can predict that but hearing from others helps a little.

Thank you for any information you can share. I will be thinking of you and your daughter.

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