Family Split on Avastin Decision for My Sister

On Nov 09, 2012 1:41 PM siblingof wrote:

Hi scabetti-- She was off the avastin because, after about 8 months on it, her tumor began to grow again. So they took her off it for two months and put her on an experimental drug. That was very bad as the tumor growth accelerated a whole lot. So they put her back on the avastin and the growth slowed down again. So of the last year, she's been on it for about 10 months.

Siblingof,

That's very interesting.  It seems like it hits a threshold then works again later.  Thanks for telling me.

 

 

So sorry about your sister.

My husband did two cycles of Avastin and then stopped because it did not work for him.  However, it was worth a try and it was his final try as far as treatment was concerned.

If Avastin is effective, I believe that results are almost immediate.  It's not something that you have to wait for weeks to figure out if it is working.

So I would vote to try it as your sister's quality of life is so poor.  To convince your mother and other sister, perhaps telling them that the results will probably come quickly and if it doesn't work, she just stops at one treatment.  I think most of the side effects happen with extended use. 

My husband also felt very ill on temodar.  Not quite as bad as your sister, but he was miserable on it.  He had one good week a month. 

I hate how there are so few good treatments options for GBM.  Avastin is one of the few meds that gives some people some good quality time. 

God bless.  Hope you figure out something  out,  Sally

On Nov 06, 2012 4:12 AM scabetti wrote:

My nephews and I are for Avastin to help their mother (my sister).  My mother and other sister dont want anymore treatment.  My 52 y/o sis dx with GBM 01/2012.  Had tumor removal, radi with temo and 1 maintenance temo.  Stopped further temo cuz it made her so sick she ended up in hosp dehydrated, extremely emotional and cognitive impairment.  Towards end of summer she progressed with aggressive behavior towards us ending with a major rage screaming extremely loud, kicking the garage door, etc...So we put her in hosp.  She was put on 3 anti manic meds and Haldol. Two days later she's incontinent, non ambulatory, constant flat facial expression, difficulty speaking, and became a feeder.  We brought her to Dana Farber in Boston where they advised us to start her on Avastin to decrease swelling and slow disease progression.  My sis and mom dont want her to take it cuz of stroke or blood clot risk.  She is on coumadin and has a IVC filter implanted.  If she has the avastin the swelling will go down then so will the decadron dosage along with stopping the Haldol.  Therefore, she will most likely have a better quality of life and it may be extended.  If we dont do anything soon her days are numbered.  Please give me your thoughts on this.

loveiseternal,siblingof,ws1953,fierogirl,jon4156,Diane G 2,

I printed your replies and gave them to my mom to read and now she has agreed with me.  I'm so glad I posted on this site.  Now, I just hope its not too late for her to get the Avastin.  I'm bringing her to her appt Monday and I'm gonna ask if she can just go ahead and get it started asap without an MRI and just do the MRI after her 1st tx.

You all made a difference in our lives.

Bless you all.

Thank you very much.

Lisa Gamache

 

Good Luck and best wishes. Hope every thing works good. Keep us posted.

Update:  Brought my sis to Dana Farber Boston today.  Had MRI: tumor about 3cm; swelling increased; onco suggested shunt then Avastin to start 2 wks after shunt.  My family is in agreement.  :)                                                                                                                                                                                                                                                                              Profile Pic:  Finding it difficult to post pic on my profile due to max size requirements.                             

UPDATE:

My sister is recuperating from shunt placement @ Brigham and Women's hosp in Boston.  She has since become more alert; breathing better; sitting up better; able to speak in some sentences; eyes are open and tracking and focusing; she is smiling.  She will start Avastin in about 2 wks.  She will be going into rehab very soon.

On Nov 09, 2012 1:41 PM siblingof wrote:

Hi scabetti-- She was off the avastin because, after about 8 months on it, her tumor began to grow again. So they took her off it for two months and put her on an experimental drug. That was very bad as the tumor growth accelerated a whole lot. So they put her back on the avastin and the growth slowed down again. So of the last year, she's been on it for about 10 months.

I was diagnosed with GBM in January 2012, had the standard treatment: surgical resection (they said 95% based on post-op MRI) followed by IMRT radiation and daily Temodar for 6 weeks. My tumor returned 2 weeks after surgery (making my tumor recurrent) and I started having symptoms (loss of balance, headaches, vision, etc.). I was started on Avastin at that time (Mid- February). My symptoms disappeared within a few hours of the first infusion, and I continue with an 800mg infusion every 2 weeks with no adverse side effects - I was able to wean off Decadron from 24mg daily to zero. Five MRIs since then have shown no disease progression. I also have the Novocure device since April 2012; it's FDA approved for recurrent GBM. The Novocure is not without its problems (mainly user related) but I've had no adverse side effects and MRIs every 2 months have shown no tumor growth.

jbwgolfer:  Wow, thanks for reporting your positive results from the Avastin.  As my sister is approaching her 1st tx my family still has concerns.  We accomplished 2 hurdles of her getting another MRI and the shunt placement that were done this past week. 

My 53 yo husband is on his 3rd year of Avastin treatments. When he got off of treatment after 1st year he had mental issues within 2 months. His scan looked stable and he was better mentally in about 6 weeks. But did go back on A soon after that episode ended and stayed on A for another full year. He got off for 7 months and is now back on every 3 weeks maintenance dose and he is fine. Often wonder how long he will be able to do Avastin since it has been his miracle drug. One day at a time. Everyone is different but her doctors will know best. Trust them. My husband was dx Aug 2008. Avastin has been lifesaver!

Taylors13

Thank you for sharing your positive experience from Avastin.  I've gotten some feedback that Avastin works for awhile then hits a threshold but then works again after a break.

I'm also wondering if your husband is or was on decadron for swelling and if the avastin helped with the swelling?