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Working through avastin

princesspurple
Posts: 6
Joined: Jul 2012

Hi All,

Anyone have experience working through avastin?

A little background: Brainstem glioma dx 2009 6 weeks temodar and rad, followed by 3 mos temodar had a very flexible schedule then. But have managed to keep a pretty rigorous work schedule (75 hours a week or so and oft 24 hours at a stretch) since then, and while it was incredibly trying was able to keep this schedule through gamma knife and more temodar back in 2010.

Thankfully recurrence free since 2010, but have had a terrible time with radiation damage, and a complicated time with high dose decadron for it (gi bleeds, ruptured ligaments, infections, terrible insomnia and mood issues), so my NO is recommending we try avastin.

But avastin is new to me. All my prior chemo treatments were with temodar. Anyone have any experience with this?

Also anyone have experience working through these types of things in general? It always seems hard to find folks who are working full time with these issues (still have a lot of residual headache, nausea/vomitting, hearing loss, fatigue, etc.), could def use someone who can relate.

Many thanks.

Raani01
Posts: 68
Joined: Mar 2011

Hi, i heard lots of good results with Avastin (tumor shrunk, feels better, no side effects etc..), unfortunately some bad (In my husband's case, Avasting caused brain bleed!and we tried it as last resort). You seem like a high functional individual.I would suggest to get a second or third opinions from well known brain tumore centers like Duke and MD Andesons etc... And do your own research and ask all kind of questions to your NO to learn about Avastin. These chemos do lots of things to your brain, it can be good for some and bad for others,No Neurooncologist knows all well, only God knows how it will effect you. In my philosophy, knowledge is power and it gives you "no regret" when looking back.
Good Luck!
Raani

princesspurple
Posts: 6
Joined: Jul 2012

Thanks Raani.
Sorry to hear your husband had a bad experience.
I've been very lucky in being able to have a good level of function til now, and def don't want to jeopardize that.
Have had a second opinion (at this point all my decisions are jointly made by my team at MSKCC and Mayo), and feel pretty well-informed, but knowing all the info just doesn't seem to make these decisions all that much easier.
Am definitely scared about the possibility of a bad outcome like what happened to your husband, but starting to feel like I have to give it a shot because of all the negative side effects from the steroids and since they're not controlling the edema that well any more.
Thanks for the advice and sharing your experience.
Best to you and your husband.

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