Radiation side effects

My husband is about to complete his sixth week of radiation.  He has Anaplastic Olio(one tumor was removed, the other larger one is intact).  Before the radiation began he did have some balance problems, and many of the other symptoms caused from a right frontal lobe tumor, but he was almost his normal self.  Since being diagnosed with brain cancer, September 19th, he has gone from using a cane, to a walker, and now he is need of a wheelchair.  He is also now having seizures daily (up to three a day), has loss of bowel, and bladder control, and is a shell of his former self.  He's taking 8mg of decadron (they tried weaning him off, but he had unbelievable headaches, swollen eyes, vomiting) and several different anti-convulsants.  He had a seizure during radiation yesterday, then today he collapsed in the parking lot (I broke his fall, which wasn't easy.  I'm 4'10, and he's easily a foot taller and over 100 lbs heavier than me) and they had to call an ambulance.  I spoke with the Oncologist and he says that this is common for people going through brain radiation, and we'll see improvement after he completes his treatments.  Because he seems so much worse, of course I'm worried his tumor is progressing.  Am I just being silly?  What exactly should I look for?  Do you know of anyone/or have you yourself been to the point of being able to even walk and after a time of healing completely recovered? 

I can't answer radiation side effects, as my husband tolerated 2 full rounds over 9 years very well with few side effects.

What I am curious about is his AEDs, and why someone isn't addressing the fact that he is still having so many seizures.  Is the NO the doctor that is responsible for the AEDs?  Seizures themselves can cause a lot of neuro problems and damage, and the fact that he is still having up to 3 a day is pretty unacceptable to me.  I would ask for a consult with an Epileptologist (a neurologist that specializes in seizures).  There are so many AEDs out there. 

-Karyn 

On Dec 06, 2012 8:35 PM slacy40 wrote:

My husband is about to complete his sixth week of radiation.  He has Anaplastic Olio(one tumor was removed, the other larger one is intact).  Before the radiation began he did have some balance problems, and many of the other symptoms caused from a right frontal lobe tumor, but he was almost his normal self.  Since being diagnosed with brain cancer, September 19th, he has gone from using a cane, to a walker, and now he is need of a wheelchair.  He is also now having seizures daily (up to three a day), has loss of bowel, and bladder control, and is a shell of his former self.  He's taking 8mg of decadron (they tried weaning him off, but he had unbelievable headaches, swollen eyes, vomiting) and several different anti-convulsants.  He had a seizure during radiation yesterday, then today he collapsed in the parking lot (I broke his fall, which wasn't easy.  I'm 4'10, and he's easily a foot taller and over 100 lbs heavier than me) and they had to call an ambulance.  I spoke with the Oncologist and he says that this is common for people going through brain radiation, and we'll see improvement after he completes his treatments.  Because he seems so much worse, of course I'm worried his tumor is progressing.  Am I just being silly?  What exactly should I look for?  Do you know of anyone/or have you yourself been to the point of being able to even walk and after a time of healing completely recovered? 

Hi slacy,

I was on proton radiation from April 3rd until abnout May 18th or so (concurrent with 140 mg Temodar).  Initially I tolerated both well, even continued to drive until sometime in May when the combined treatment wore me down and put me in a  in a wheelchair for anywhere I had to go where there a lot of walking involved.  I used the wheelie for roughly two weeks or so, then by June I  rebounded.  Only used the chair once more, and that was in August for a concert (Diana Krall) at the Hollywood Bowl, and there is a LOT of walking there.  I didn't put up too much of an argument.  Four weeks ago tomorrow  I completely my last (hopefully) round of Temodar and now I need to recover from that as well. As far as I know I've recovered from radiation. What type radiation is your husband undergoing?

Don't worry about seeming silly, this is a very serious situation. Tell your husband he has my sympathy, what he is going through is no picnic.

radiation caused the typical hair loss for me and about 3 weeks into radiation my energy level went from great to about zero.   It did start coming back with in a few weeks of completing it

Thanks you Kayrn that was some very helpful information.

Hi Slacy; My husband is on his 3rd week of radiation and like yours he had amost no symptoms before radiation and chemo started.  He had been having some difficulty holding on to his weapons in his right hand.  (He is a Martial Artist) During a Karate tournament he lost his balance and fell for no apparant reason.  He didn't tell me at the time but as soon as we got home he made an appt. with Doc on a Monday by Thursday we were seeing a Neurologist one week and a half later we were having surgery to remove the tumor.  They were able to remove 99% of the tumor.  He still has to have 6 to 8 weeks of chemo/radiation.  Every week something new boters him.  He says its feels like his scalp is on fire; the first day of chemo he was MAD SICK the doc perscribed the Temador and he hasn't been sick only a few stomach rumblings.  He started having headaches so he has been on decadron for two weeks now and I do see a little mood change (thank goodness he was always mild mannered so no too bad) His eyesight is really bad now, he complains of sore bones, this week he started having really bad bleeding when he brushes his teeth.  But his balance has been normal with two bouts of falling down when he just loss all feeling on his right side.  He still drives short distance becaue he feels that he will be able to "TELL" if he is going to have a seizure.  He hasn't had one yet.  His skin is darkening and his mouth is dry.  He has some blistering on his nose.  He says he feels as if he is being cooked from the inside out.  His writing is horrible and he loses his train of thought.  So far is appetite is still great, but I do still pump him with two protein smoothies a day.  He walks slower and I can tell he is in pain but he won't say.  Our radaition doc just told us its going to get worse these next three weeks so we are bracing ourselves for that because my husband although can take a lot of pain being a champion fighter he cannot take the pain of this sickness.  I have never seen such fear before taking a pill.  My heart aches for him because without it he will be dead (according to doc) within 3 months.   Its hard to imagine cause he still at this stage looks healthy.  I am telling you all he is feeling so that maybe it can be a reference to you.  I look for ppl going through some of what he is going thru to see if I can do anything to help him from doctors to meds to diet.  I am hoping for some recovery after this treatment as well its what keeps us going.  We know sooner or later this diease will take him but we are hoping that all this treatment is for some normalacy down the line, so that he may work again, open his Dojo which was suppose to open in January and go to Hawaii in April.  I hope you will find some normalacy too.

On Dec 06, 2012 11:20 PM Randy1958 wrote:

On Dec 06, 2012 8:35 PM slacy40 wrote:

My husband is about to complete his sixth week of radiation.  He has Anaplastic Olio(one tumor was removed, the other larger one is intact).  Before the radiation began he did have some balance problems, and many of the other symptoms caused from a right frontal lobe tumor, but he was almost his normal self.  Since being diagnosed with brain cancer, September 19th, he has gone from using a cane, to a walker, and now he is need of a wheelchair.  He is also now having seizures daily (up to three a day), has loss of bowel, and bladder control, and is a shell of his former self.  He's taking 8mg of decadron (they tried weaning him off, but he had unbelievable headaches, swollen eyes, vomiting) and several different anti-convulsants.  He had a seizure during radiation yesterday, then today he collapsed in the parking lot (I broke his fall, which wasn't easy.  I'm 4'10, and he's easily a foot taller and over 100 lbs heavier than me) and they had to call an ambulance.  I spoke with the Oncologist and he says that this is common for people going through brain radiation, and we'll see improvement after he completes his treatments.  Because he seems so much worse, of course I'm worried his tumor is progressing.  Am I just being silly?  What exactly should I look for?  Do you know of anyone/or have you yourself been to the point of being able to even walk and after a time of healing completely recovered? 

Hi slacy,

I was on proton radiation from April 3rd until abnout May 18th or so (concurrent with 140 mg Temodar).  Initially I tolerated both well, even continued to drive until sometime in May when the combined treatment wore me down and put me in a  in a wheelchair for anywhere I had to go where there a lot of walking involved.  I used the wheelie for roughly two weeks or so, then by June I  rebounded.  Only used the chair once more, and that was in August for a concert (Diana Krall) at the Hollywood Bowl, and there is a LOT of walking there.  I didn't put up too much of an argument.  Four weeks ago tomorrow  I completely my last (hopefully) round of Temodar and now I need to recover from that as well. As far as I know I've recovered from radiation. What type radiation is your husband undergoing?

Don't worry about seeming silly, this is a very serious situation. Tell your husband he has my sympathy, what he is going through is no picnic.

 

 

 

Thank you for your input.  It gives me hope that he may walk without difficulty again soon.  I can't really tell you what type of radiation he's having, but I know it's not whole brain radiation, they are just pinpointing the tumor (they were unable to resect any of his larger tumor).  Right now they are doing higher doses.  He has 5 treatments left.  The Oncologist said they are going to go ahead and start Temodar in 6 to 8 weeks.

On Dec 06, 2012 10:21 PM karynk wrote:

I can't answer radiation side effects, as my husband tolerated 2 full rounds over 9 years very well with few side effects.

What I am curious about is his AEDs, and why someone isn't addressing the fact that he is still having so many seizures.  Is the NO the doctor that is responsible for the AEDs?  Seizures themselves can cause a lot of neuro problems and damage, and the fact that he is still having up to 3 a day is pretty unacceptable to me.  I would ask for a consult with an Epileptologist (a neurologist that specializes in seizures).  There are so many AEDs out there. 

-Karyn 

After his seizures increased so noticeably this weekend I spoke with his radiation oncologist Monday.  He increased his Keppra to 500mg three times a day.  Then my husband had a grand mal seizure while they were prepping him for his radiation treatment and they immediately took him to the Dr. and he consulted with a Neurologist.  The Neurologist added 150 mg (x2) of Trileptal to his medicine.  They also added lorazapam to his long list of medications.  He's suppose to take it if he feels a seizure coming on (although he doesn't usually have any idea, he just drops), or after he has a seizure.  I'm hoping this new medication will help with the seizures, it's certainly no quality of life. 

When my husband was like that hospice said the cancer was progressing he was on seizure meds and took ativan to stop them on top of the seizure meds it worked for awhile and than quot working he had brain cancer that was caused by going to the brain from the lungs he had a lot of leisions in the brain that kept growing he had a choice hospice or treatment he also had it in his lymoph nodes and right lung he came home may 31 on hospice care he passed 0ct 30th he also could not walk after sept the 7th and fell he never lost control of bowels only 1 time and that was from a seizure followed by a heart attack on may 31st when he first found out he was on dilation for the seizures and prednazone for the brain it worked good for him his hospice doctor did not like to use the decadron the hospice nurse said that each time he had a seizure it took something away and when he did he was so tired afterwards and would just sleep sometimes i don,t think the treatments is worth it because i was told that they go downhill faster at least i had mine for 5 months and with treatment he may have only lasted a few months I wish you and your husband the best of luck it is the hardest thing to go through to watch someone you have loved for years and was once strong and did everything to not do nothing now and need cared for just hang in there and let him know every minute that you are there for him and that you love him

Lorazapam is what they gave my husband too i just called it ativian it was drops to put under the tounge it worked at first but made him very sleepy afterwards because the seizures took alot out of him i see alot of people on here that the doctor gives them keppra for seizures mine took dilantin and did well he took them all at night towards the end before he passed we tried to give it to him at differant times and split them up and the doctor said to take them all at once at night to help him sleep also you are walking down a long road and i pray for you both for strengh and comfort