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avastin for gbm

justmirmar
Posts: 8
Joined: Mar 2013

Good morning every one. i was just told that i am getting on avastin. in may i had a tumor and got syber knifed. and now two months later i have three more. they are taking off the temodar. and instead of surgery they are doing syber knife again putting me on avasin. i guess my body is not working with the temodar. i have been dealing with this for only 7 1/2 months. has anyone else had such an aggressive tumor that they got put on this avastin so quickly?  

Ninamom
Posts: 24
Joined: Aug 2012

My daughter was diagnosed in August '12.  She has had surgery that did not get the whole tumor. Then radiation , temador along with a Gamma Knife.  She stopped temador 7 months into treatment because it didn't work.  Another Gamma Knife and still no complete remission.  Now 4 spots on the MRI onLY thing left was Avastin.  On Friday, July 19 she had her first dosage.  I wish I could tell you it went well, but on Monday we were in the ER.  fluid on the brain, severe headach, confusion and blurred vision.  I have heard this does not happen to everyone.  There are success stories and people who have side effects.  Please read up on this drug and its side effects.  My daughter knew this was the only thing left for her to try.  Her thought was I must try everything to keep living.  Tomorrow the doctor will tell her if she can continue,but I don't think it is possible.  I wish you well and the drug works for you.  The hand you have been dealt is one no one should have.  My prayers are with you and every person who has been given the same hand.  Good luck.

weekiwi
Posts: 1
Joined: Aug 2013

My mom was diagnosed in July 2007. She had a very slow growing tumor that was not operated on until January 2011. She did radiation as well as oral chemotherapy and 10 months later the doctors decided that they needed to operate again on that same area, fearing they had not gotten all of it. It turns out that it was only dead radiation cells and that site looks great today. The only thing that I cannot understand is why the nuerosurgeon did not suggest to us to have my mom's vision checked after the last surgery. We were completely unaware of a new peripheral blind spot my mom had developed.

On January 5th this year, my mom was playing golf and drove her golf cart into a tree in her peripheral blind spot. She broke her neck and suffered a severe TBI. After 2 months in the hospital, we went back to her neuro-oncologist only to find a new tumor had started growing. She had gamma knife in May this year and her tumor has increased dramatically in size since her June MRI. She had an MRI yesterday and the neuro-oncologist is going to start her on avastin and carboplatin this Monday. I guess this tumor is grade III and was completely unaffected by oral chemotherapy and gamma-knife. In the last two days her speech has gotten worse and she can no longer walk. I am praying that she does not have a reaction to avastin and carboplatin as this is our last option for fighting this and we do not need any more complications! It has grown 30% in one month since the last MRI, and I am so worried about how aggressive it is and if this IV chemotherapy will do the trick or not. Please let me know of any advice or suggestions you have for this Monday. The doctor said this treatment should bring her back to a better functioning level as it seems her symptoms are directly related to the swelling and growth of the tumor. Sending love and prayers out to all those currently fighting, all the survivors, and love ones of those affected by this terrible disease. Praying for strength to be a rock for my mom during this difficult battle. 

-Katie

Rayanmckee
Posts: 9
Joined: May 2013

 Katie,

I hope your Mom is on the mend from her neck injury & TBI. I wonder if the new tumor caused her peripheral blind spot? After my resection we knew that I had a a peripheral blind spot, and before surgey, vision loss was speculated in that eye; because of the tumor location at the occiptical nerve.

I hope the new meds work for her and the possible side effects are minor. Your job is tough as a support person, but soo necessary. Keep it up and be strong!

Ryan

phillip.reinbold
Posts: 1
Joined: Sep 2013

My wife was diagnosed in 12/2013 with GBM4. After a resection in January, she started the chemo/radiation combo. She stayed on the chemo for about 7 months. She had a clean MRI two months prior to her last one at the beginning of this month. In that two months span her tumor came back and was bigger that it was when it was first discovered. The new plan of attack is Avastin, also qualified for a clinical trial, so we are hopeful. I have read good and bad things about Avastin. The general concenses is that it helps for 3 or 4 months, then a rapid decline as the tumor become resistant and learns to spread evern faster. I am hopeful that the Avastin and the clinical trial will do work well for her, but I remain skeptical. 

So it appears we are on similar paths. I was also curious if this was a normal progression of the tumor growth, or if we are on an accelorated path and its not the norm.

Such a crazy disease that shows no prejudice, it affects all kinds.  

Fritzmom46
Posts: 2
Joined: Sep 2013

Hi there, my mom who is 65 was diagnosed three years ago with gbm.  She had the usual radiation and temador.  We live in Canada so Avastin wasn't an option other than through clinical trial.  My mom signed up for a double blind clinical trial and we just found out two months ago that she has been on Avastin for two yers.  She has actually manged quite well on it.  She's had some issues with high blood pressure (this was pre-existing) it was made slightly worse by Avastin and now she's having some problemswith her veins collapsing.  She is going to get a stent put in for ease of administering.  It really seems to have kept it controlled.  She has had continuously clear Mri's.  The only real drawback is that she now needs a knee replacement and you have to go off Avastin for one month prior and one month after surgery so this is a decision that we haven't made yet.  Good luck, read up on it and ask lots of questions. 

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