One patient with glioblastoma still alive nine years later
by eileenkay on Thu May 14, 2009 12:00 AM
by Bruce_Edward on Thu May 14, 2009 12:00 AM
I disagree with your doctor! My 21 year old daughter was diag. with a GBM and due to the location was able to have surgery. She had the standard radiation/temodar. She is now on the 5 day/month temodar cycle. Her MRI's are every eight weeks. She originally had surgery Jan. 2, 2008 and continues on the 8 week MRI schedule. In answer to prayer, each and everyone has been clear! You have to be the advocate.
by Heritage_Softail on Thu May 14, 2009 12:00 AM
As Bruce stated I disagree as well. I am on temodar 5/23. After each cycle I am in for an MRI so they can watch it closely. Seems they are putting the cart in front of the horse. God Bless
by flfrog on Thu May 14, 2009 12:00 AM
I disagree with that as well, my dad had MRI's about every 8 weeks until he finished the 6 month temodar regimen (5 / 23). then he went to every three months which I think was too long. He had an MRI end of Aug which showed slight changes, MRI in Dec had significant changes and a PET scan was done to show changes were necrotic with one questionable area near original tumor sight, MRI in March showed 3 new tumors and MRI in April showed a fourth with further changes. Around December we started noticing changes with my dad but they were all mental / memory related so it was all chalked up to side effects from treatment. I know MRI's are expensive but I think waiting over 2 months is it too long because of how much my dad changed from March to April. It again depends on the dr. as the time frames ranged from 2 months to 6 months until the next MRI depending on which dr. we saw which we always went with the dr. who would do the MRI the soonest which was the radiation oncologist. We really miss him now that we had to switch to a different hospital but since dad is on a clinical trial he gets the MRI every 8 weeks are next one is on 5/28 so hopefully it will show the chemo is working. The whole thing is SOOO frustrating and the dr's really do not communicate well on the illness but I think it is because they truly don't know what's going to happen as everyone's brain and tumor is differnt.
Blessings to your family!
by Lorre_G on Thu May 14, 2009 12:00 AM
by Cvillelarry on Thu May 14, 2009 12:00 AM
I too have AA dx 7/2006. I have had MRIs every three months since the post radiation scan. I'm surprised that the oncology-radiologist is setting the schedule.My neuro-oncologist manages my care.
Yesterday's scan showed no change, btw.
by MargaretAnn on Thu May 14, 2009 12:00 AM
My mother just completed radiation for GBM (dx 03/09), and has an MRI schuduled every four weeks! We are in Canada, so not sure if this makes a difference. These tumours are extremely agressive and we were told by our NO and RO that they can as much as double in size in the course of two weeks once they start. Six months or even four, is far too long for this type of cancer. I would seek a second opinion asap!
Best of luck to you and don't give up! Remember that sometimes you have to advocate quite strongly in order to get the treatment your loved one deserves.
by Bella117 on Thu May 14, 2009 12:00 AM
I also agree with all of the other posters! I would also hope you'd seek another opinion, If a Doctor is worth anything, they'll help you in finding another Doc to get an opinion from or depending if you live near a larger city, do the research yourself. PLEASE, never for one moment soley rely on that information alone.
Best of luck to you,
Colleen, father dx. GBM 12/08, surgery, radiation, temador and they now have the tumor currently under control!!!
by VA_Husband on Fri May 15, 2009 12:00 AM
The location of the tumor has much to do with the ability to operate; however I would at the very least get a separate opinion. There is Gamma Knife proceedures that can be done as well as a new computer guided 3D technique for brain tumors that give the surgeons 100x' more detail and accurate use of the intruments.
As far as MRI, you do need to wait about 4-6 weeks post radiation to get a clear picture as dead tumor and scar tissue can be misread. After that I think every month is standard for GBM. for Grade III,which is the diagnosis you mentioned perhaps 4 months is OK as this is slower growing than GBM (which is grade 4). My wife was dx'd with GBM in June-07 and has been cancer free since her last surgery in Oct-07. She takes Avastin every 2 weeks. She was getting MRI's every month for the first year, and then they went to every 3 month, and is now on every 4.
Hope this helps,
by Brandoncg on Fri May 15, 2009 12:00 AM
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