Friday, 10 March 2017

Hello, hoping for some advice. My husband was dx Grade 2 Astrocytoma in Jan 2016. Since the tumor was so wide spread in 3 diff lobes and MGMT methylated we tried  TMZ only, bc RT couldve caused cognitive decline. He did TMZ for 6 months with stable scans. But then went off for lumbar fusion surgery bc in so much pain. (Long story... surgery was disaster and ended up on walker and horrible pain afterwards) He began having seizures, Nov 28th so we had an MRI done Dec 1st of 2016 which showed mutation to GBM in a sphere  2cm in medial temporal lobe and also enhancement in the cerebellum both sides. He had craniotomy on Dec 16th to remove spherical tumor. We were told after surgery that RT was a must, so we met with RT oncologist on Jan 3rd for mask fitting. In the meantime, while waiting for RT to start my husband began having headaches and mild confusion. A MRI on Dec 17 showed the tumor had grown after craniotomy 10 days earlier.  It took a long time to get scheduled for RT, but he finally started Proton RT Jan 24th 2017. He finished Chemoradiation on March 2nd, after 28 sessions. Dr thought that would be good to stop a little early bc he us 80. He was receiving 1.8 gy per session. But to a large field. 3 diff angles. He was confused during RT, but Dr insisted it was from valium he was taking for claustrophobia (bc of mask) so we tapered him off valium last week of RT. It has been 15 days since he has had any valium and his confusion seems to get worse daily, and he realizes it. He is very devastated and says that he has lost his mind, and thinking skills. Im trying to encourage him not to give up he may get better.  It has only been 8 days since finishing RT, but I am worried this confusion is either swelling from RT or tumor growth. I called Dr yesterday and they want me to increase his decadron, which they have had him on entire course of RT 1mg in morning, to 2mg.  And just wait for our follow up on March 28! Hello! That is a long time to wait I worry if it is growing Im giving it all that headstart, but the question is: can you get an MRI this soon after RT that can distinguish btwn RT and growth? My other question is, Has anyone had confusion like this during and after RT? Thank you so much for help❤I thought of trying Boswellia, but pharmacist said it could interact with other drugs.


  1. Typically the first post-radiation MRI is done about four weeks after the end of radiation. Radiation disrupts the blood-brain barrier and causes edema which will effect the MRI imaging, which is one reason they wait several weeks before imaging. Side-effects from radiation can include drowsiness/sleepiness, fatigue, headache, confusion. Radiation effects can be acute (manifesting during radiation), subacute (manifesting up to 12 weeks post radiation), or late. The confusion could certainly be the result of radiation injury.

  2. Stephen, thank you so much for your reply. Today was another bad day emotionally for my husband. He is completely distraught. He keeps saying, "I dont know what to do," and I cant live like this. and he doesnt know where he is, although we have lived in our home 11 years. I just keep explaining the situation to him over and over trying to reassure him. He asked me if he was in a car accident which wouldve caused his confusion. According to your response regarding edema from RT do you think I should wait for our scheduled MRI in 9 days, and increase steroid to maybe 2.5 ? Thank you so much for your time.

  3. My wife was terribly confused for the first six months after radiation and surgery. It takes a very long time for some people to recover. The first week, I had to tell her she had cancer for the "first time" about 10 times. It was heartbreaking for me each time:

    Moreover, there is zero reason to want/get an earlier MRI, I'm afraid. It won't show anything - especially in your case - because there is clearly swelling and damage from the SoC.

    My wife's first MRI didn't show much at all as there was so much swelling and radiation effect.

    It's a horror waiting but no sense in putting you and him through an MRI that won't provide anything meaningful.

  4. Logan Lo,
    Thank you so much for help, and details of your story and link. Im going to read it asap❤

    1. I am new to participating on this blog but have been following for many months. Rhlgator, I just wanted to let you know that my sister was at 8 and 6mg of Decadron/dexamethasone for quite a few months after RT and we tapered it down slowly over the course of the next year. She's still at 1mg daily.