Still tired after radiation 6 months ago

Hi Brain CA survivors,

I am getting concerned for my friend who had radiation some 6 months ago for astrocytoma grade 11, and still is quite tired.. Is this normal?? I would have thought that at such a low grade she would be well on her way to feeling energetic and be more active.. she is on anti seizure meds, that is all I know as she seems to not want to give me the whole story at times..maybe she doesn't want me to worry...

thanks for sharing and all the best to everyone  who had to struggle with cancer.

Hi, I suffered extreme fatigue the first couple of years after treatment for GBM.  Next monh will be 20 years.  Try to remember your friends brain has been through alot of slicing, dicing. frying and marinating.  the grade is not the key but the treatment.  I slept alot and am convinced that is why my brain healed so well.  be patient.

Thanks for your post... I will keep that in mind.

I had sinus cancer (SNUC) in 2005-2006.  My tumor large enough that it effected my right eye orbit and was up against my brain and my carotid artery.  I had 24 rounds of chemo and 7 weeks of radiation (35 treatments).  My total treatment lasted approximately 6 months. 

Radiation is so incredibly precise, yet it still "peters out" and has some effect on other tissues such as the brain.  I had incredible amounts of fatigue for long over a year after radiation was complete.  One medical student (I was treated at Vanderbilt) asked me what my symptoms were and I told him extreme fatigue...  it was 12 months since last radiation treatment... he said "the book said it takes about one week to recover from each radiation treatment".... I stopped him right there.  That's what the book says, but it's not always the case!  I do better now, but have to wonder about the chemo brain and my memory lapses.  Is it my age or related to treatment?  I don't know. 

What I will tell you is to rest when you can.  Enjoy all that you can... and never take life for granted.

Sorry to read about your friend. I had a stage 4 tonsil cancer, with right lymph nodes; the usual treatment, 35 IMRT and 3 rounds of chemo. That was 4 years ago, and I'm still fairly fatigued. I have several ongoing issues, and this is one that affects me the most I'd say. But I told myself years ago to "just keep moving"....and I do! I figured if I was going to be "tired" all the time I might as well be so, doing things I like to do rather than sitting around all day and night.  It's a sucky feeling; and of course, each situation is different. I take little breaks during the day, most days. Some folks get over this fatigue more quickly than others. One of the hard things too is not knowing "when". I figure I'm back to about 80% and as stated here, I'm thankful for the things I can do again, and I don't take much for granted anymore!

Wow.  I had a hard time after treatment too because although I looked like myself again, there were things like fatigue that people could not see.  People who haven't been in our situation just don't get it!  I went through a bad divorce about 2 years after my treatment and during that time my now EX husband said something about how I laid my lazy ass on the couch and didn't return to work... the time he was talking about was just 1 month after radiation (35 treatments to my head) and after 12 rounds ot chemo --- I still had 12 additional rounds ot chemo to go!!!  What an idiot!  I finally got mad and told him if he could do it better than me... I'd like to see him try!  haha!  He just had no clue!  God bless you and just do the best you can!

On Jan 09, 2013 2:20 PM Michele_p_3 wrote:

Wow.  I had a hard time after treatment too because although I looked like myself again, there were things like fatigue that people could not see.  People who haven't been in our situation just don't get it!  I went through a bad divorce about 2 years after my treatment and during that time my now EX husband said something about how I laid my lazy ass on the couch and didn't return to work... the time he was talking about was just 1 month after radiation (35 treatments to my head) and after 12 rounds ot chemo --- I still had 12 additional rounds ot chemo to go!!!  What an idiot!  I finally got mad and told him if he could do it better than me... I'd like to see him try!  haha!  He just had no clue!  God bless you and just do the best you can!

 

Sounds like your Ex husband could use some wall-to-wall counseling, preferably head first. 

I was diagnosed with GBM last February, had surgery to debulk the bastard, then 33 or thereabouts treatments of proton radiation, and seven months of chemo.  A friend of ours also had a brain tumor, but fortunately for her it was benign--still, she had to go through radiation and chemo.  We got together and compared notes, she told me some people scoffed at how tired she claimed to be.  ******** idiots.

GBM... WOW!  How are you now?  People who have never been through treatment or cared for someone who has been through treatment (chemo or radiation) just have no clue.  Some try to understand and are empathetic, but others just need to be quiet!  :)  When I told my Oncologist what my ex had said (of course this was on a follow up visit with her after my divorce) I thought she was going to explode! My ex witnessed my radiation session (from the protected technician area)one time.  The next day my tech asked me if my husband was OK.  When I asked him why, he said that he was white nuckled and looked faint watching me in my radiation mask getting locked down to the table.  HA!   

my husband's whole-brain radiation was 6 months ago as well (for GBM).  and if it were up to him, he'd sleep 20 hrs a day and only wake to eat, shower, etc...  the NO just prescribed a low dose of ritalin to try to give him a little 'boost' during the day.  my husband is against it though and says sleep helps him get better.  sigh.  but how much is too much?  :(   it seems to me too much sleep is simply unhealthy...  but i dont want to be a jerk and push this rx on him.  maybe one day i can convince him to try it once to see how he likes it?...

On Jan 09, 2013 5:46 PM Michele_p_3 wrote:

GBM... WOW!  How are you now?  People who have never been through treatment or cared for someone who has been through treatment (chemo or radiation) just have no clue.  Some try to understand and are empathetic, but others just need to be quiet!  :)  When I told my Oncologist what my ex had said (of course this was on a follow up visit with her after my divorce) I thought she was going to explode! My ex witnessed my radiation session (from the protected technician area)one time.  The next day my tech asked me if my husband was OK.  When I asked him why, he said that he was white nuckled and looked faint watching me in my radiation mask getting locked down to the table.  HA!   

Hi Michele,

Almost 11 months since diagnosis and I'm still here to tell the tale-- the survival statistics for GBM are pretty goddamned grim.  I've had two MRIs since beginning treatment and both o them have came back clean (the first in late June showed what I'll describe as "chatter", probably brain swelling from radiation, but no evidence of recurrence; the September MRI was even better.  In docspeak, the report said, "There is no evidence of recurrence or residual neoplasm".  I've heard from people around the country who having it a lot worse than I am, so believe me, I am not complaining.  I had a third MRI last Friday, no big deal, I even fell asleep inside the machine.  Should know the results sometime tomorrow. 

That funny how your ex nearly fainted while watching you get locked down.  I'll bet he glad it wasn't him.  I wore a mesh mask also; they let my wife take pictures of it and also locked me down to the table.  Good thing I'm not claustrophobic, because it could have been scary. I new I could get out of it if I had to.  I also fell asleep occasionally on the table. The docs wanted me to rest more and I'm always willing to do my part :)