One patient with glioblastoma still alive nine years later
by Glitzy1294 on Fri Feb 01, 2013 02:51 AM
We just got results from my husband's MRI today. It's his second MRI after his radiation. He has done 2 rounds of the 400 mg Temodar. And then had the MRI Monday. When we had the MRI right after radiation, after 4 weeks, the MRI did show that there was some residual tumor but our neuro oncologist said that it was fuzzy due to the radiation and hard to tell if they were active or dying cancer cells. Our new doc has told us that it is much clearer and that they are active cancer cells. Treatment is typical, adding in Avastin, is it odd to have a regrowth so soon? I mean no two tumors are the same, I know, but I hadn't heard about this in my reading and message boards.
by Nancy46 on Fri Feb 01, 2013 03:46 AM
We too went through the same panic as you seem to be going through. My husband had 3 tumors removed in May 2011, underwent 6 weeks radiation, with temodar. His first MRI after the radiation showed a brand new tumor and we were devastated. They started him on CPT11 and Avastin immediately. This was in October of 2011. He stopped the CPT11 in March of 2012 (6 months was enough of being sick) but has continued the Avastin every 2 weeks and low and behold he has had a clean MRI since January of 2011. He is still doing Avastin only and tolerates it very well. A new MRI at end of February 2013 will be very important to us and hopefully he will be clear again. His diagnosis was AA2 with AA3 cells in the right frontal lobe and one of the tumors was in the motor strip which affected his motor skills but we are doing much better with rehab. This is a very stressful journey but we live one day at a time and pray for good MRI's.
by Nancy46 on Fri Feb 01, 2013 03:50 AM
I have a typing error in my previous reply. His first clean MRI after the CPT11 and Avastin started was in January of 2012 (not 2011) which makes him "progression free disease" since January of 2012 (13 months). Avastin seems to be very effective for a lot of people.
by csdiver on Fri Feb 01, 2013 04:57 AM
by SarahGrey on Fri Feb 01, 2013 03:19 PM
my husband's tumor(s) are inoperable - but the radiation and temodar did nothing to shrink them. it was avastin that finally worked and shrunk them 50%. next scan is in a few weeks...
by RobinMB on Sat Feb 02, 2013 05:18 AM
The more I read these posts, the more I learn. I asked our NO to send the tumor to Caris to test for specific biomarkers, and he told us that it doesn't make much of a difference. These are his words exactly, "take the $5,000 Caris will charge you and go on a vacation instead". Some NO huh. Funny thing: Each time my husband's pathology report came back after each surgery, biomarkers were the same. But, the NO insists that they change so much so it's worthless to have the tests done. My husband is not responding to the Temodar and now he is on Avastin. I think you are on the right track to more personalized medicine by having your tumor analyzed by Caris. Where are you being treated? Who is your NO? It sounds like you are in good hands.
by csdiver on Sat Feb 02, 2013 03:15 PM
by SarahGrey on Sat Feb 02, 2013 04:02 PM
ok i gotta say... it makes me crazy how some NO's are sooo against 'new' things like - sending the tumor to check it out further, trying homeopathic meds or even trying other seemingly 'safe' things like taking extra vitamin C. the current treatments obviously don't work - so be open minded to trying something a bit different! sheesh. it's crazy, my husband's NO is ridiculously against even listening to any idea outside the normal treatment everyone gets. and he's at one of the top NYC university hospitals... sigh.
by RobinMB on Sat Feb 02, 2013 04:52 PM
I had the opportunity to speak to Dr. Cloughessy. He was so helpful. I have been sending my husband's MRI's to UCLA. Dr. Linda Liau is the most incredibe neurosurgeon at UCLA with so much knowledge and compassion. She has been so responsive with the results of their findings/recommendations. I wish we could move to California so my husband could receive better care. I spoke with Caris about the cost, and they said some insurances do cover the cost. I think it is such valuable information. Good for you!!! Dr. Piccioni sounds amazing.
by ravirajagopalan on Sun Feb 03, 2013 09:50 PM
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