Very fast recurrent GBM :(

After 5 months of standard Resection + RT followed by TMZ 5dose cycles. Tumor size had been stagnant at about 1.5cmx4cm. Everything looks to be going fine, my dad was very healthy, jogging everyday.

Just when it was all looking well, at the start of the 6th month, he had a big seizure (he never had seizure before) and lost the ability to walk. We did the MRI and the tumor is back, more than doubling in size in just over 40 days, It is so devestating, our sergeon does not recommend for another resection because dad would lose his mobility completely and also because the recurrent tumor grew too fast. He reasoned that even if he had the new tumor resected, it would just grow back again, very fast. 

As for treatment, our doctor said he would schedule Metonomic TMZ + Avastin for dad, response rate may be around 20% ?!?!

I am very much in shock, to see dad's decline came so suddenly and the chance for his next treatment to work is so slim.

I thought the response rate for avastin would be around 40-50%? Why would out doctor put him on TMZ+Avastin and predicted us such low response rate, I do not understand

What options do you think there are still for me? I had considered moving to the State to seek new vaccines and treatments but again I am weighing between the benefits and having to be so far away from home.

Golf29, I'm sorry to hear about your dad's recurrence. Temodar and Avastin is a good treatment choice at this point. You are right, about 40% of patients respond to this treatment. I'm not sure why your dad's doctor said 20%, maybe he was talking about something else. An autologous vaccine is not a possibility unless the tumor can be removed surgically. There is no proven treatment available here in the US that works better than the treatment that's been prescribed for your dad. Moving to the US at this point would be a bit drastic, but you might want to bring your dad to visit one of the major brain tumor centers here, if he's up to the trip.

Thank you for your advice. He just had his first does of avastin yesterday and he seems perfectly great! I hope he will continue to get better.

I have personally had great success with temodar and avastin. What was left after surgery did shrink and go away with these therapies. I do hope your Dad is someone that will also have success with these therapies. I will have been on these therapies for close to a year on 7/17/2012 

On Jun 29, 2012 9:42 PM rickglio wrote:

I have personally had great success with temodar and avastin. What was left after surgery did shrink and go away with these therapies. I do hope your Dad is someone that will also have success with these therapies. I will have been on these therapies for close to a year on 7/17/2012 

Hello, It sounds like my brother has had the same treatment as you. Will you continue after the one year mark with Avastin and Temodar? My brother's neuro oncologist his letting him decide, but she is leaning towards continuing with just Temodar. Curious what your oncologist is thinking for you. Great to hear that you Are responding as well! Best, Diann

My husband is 68 and just finished his 12 rounds of avastin and temador.  We will now have 6 weeks off before we start monthly avastin.  He will have another MRI before the end of the 6 weeks. There were 2 questionnable MRIs.   We will know for sure what is happening.  If regrowth, we will start the avastin sooner w/chemo through the port.  He did well with the treatments.  Slowly he has been having changes...falling, failing to start conversations again, loss for words, sight changes, etc.  If it is regrowth, we will imediately start avastin and chemo through the port.  Our NO says this cancer is considered a "smart cancer" ...it can change and adapt...thus making what worked before unaffective. 

Thanks for the message, I have an oncologist in SC, close to home and i am also under the care of Duke hospital in Durham,NC. I am 4 months away from completing the one year plan at Duke of going with the 5 day cycle each month of 2 180mg pills of temodar and avastin every two weeks.After that the Temodar was to stop and i would have avastin once a month instead of twice a month.

I have gotten the feeling that my oncologist in SC will want me to continue with the temodar and avastin as usual. He has been very good to me and I handle the temodar fairly well and have had no problems with the avastin. I will most likely continue taking the temodar if that is what my oncologist in SC wants, especially if the next two MRI's look good. My last 2 MRI's have shown no tumor, don't really wont to change anything that is working.So , if it is up to me i will continue on taking the temodar for longer than planed if that won't cause other problems.

Hope your brother does well, healing thoughts sent to him. 

Thanks for your email.  My brother had surgery and treatment in Indianapolis where he lives, but did travel to Duke to get a second opinion after his craniotomy.  They suggested Temodar and Avastin, so his local onc went with that.  His MRIs have looked great like yours and he has tolerated both Avastin and Temodar with few side effects.  He is debating whether to go back out to Duke to see how they think he should proceed, but it sounds like they are thinking the opposite of my brother's oncologist, as she wanted him to just continue with the Temodar and stop the Avastin.  I think I agree with you in continuing both!  Did you have surgery at Duke or locally?  

My wonderful twin sister came and found me on a Sunday morning. She knew something had to be wrong if i was complaining of severe headaches. I don't remember anything that happened that day (7/17/2011. She took me to the nearest hospital and begged them to do an MRI. They found a large tumor the size of a tangerine at the front right of my brain. Two days later i was coming out of surgery at Spartanburg Regional Hospital in SC. Two weeks for recovery in the hospital and thereafter started the 30 radiation treatments while taking temodar once a day.Once that was completed i got into the 5-day cycle of temodar and avastin every two weeks. Somewhere in the middle of this i started having MRI'S every two months so that i could take the CD of that MRI to Duke for my bimonthly appointment. So far the only things my doctors at Duke have changed was a request that i start taking a multivitamin and calcium and to remember that they are in the business of killing cells, and to stay away from some of the super healthy stuff that people try.They do a very close evaluation of my MRI'S every two months. I am thankful for all the help i have gotten.

Hope your Brother continues to do well. I will post on this site if i have a change in treatments.

Thank goodness your sister was there to help and advocate!  Good luck to you with your ongoing treatment and scans.  We will post as well once my brother decides what route he will take when his one year mark in August arrives.  Enjoy the summer!