Brain Met – Seriously Answer needed

Are you taking anything like Dexemethasone for possible brain swelling?  You should put a call in to your MD and make them aware of your symptoms.  I was given steroids to reduce side effects from the cyberknife and also the WBRT. 

Are you taking anything like Dexemethasone for possible brain swelling?  You should put a call in to your MD and make them aware of your symptoms.  I was given steroids to reduce side effects from the cyberknife and also the WBRT. 

Are you taking anything like Dexemethasone for possible brain swelling?  You should put a call in to your MD and make them aware of your symptoms.  I was given steroids to reduce side effects from the cyberknife and also the WBRT. 

Lisa,

You know that our timings have been very similar.  I was immediately put on steroids immediately because I already had edema when the tumor was discovered and was bleeding by the SRS.  I had an mri at 2 weeks after the SRS at EMR.  Boy, I thought that was a headache, no later I found out what headaches really were.   Had all sorts of problems and I blamed everything on the steroids.    

As soon as I was told that the tumor was shrinking they had me weaning (kept having headaches everytime they were lowering).  It was then about 2 months after the procedure.  I was thinking that I was having problems with the weaning.  Was down to the point where 2 weeks I would have been off. On Tuesday when we were leaving for my PET I started seeing doubles, scared to death, the good MRI had just been less then a month!  (my dates might be off some).  I went to walk into the hospital for the scan and couldn't even walk. A guard went and got a wheel chair.

We got ahold of my oncologist and they fit in an mri immediately.  The tumor has continued to shrink. It's edema – nucrosis of the tumor.  The area is huge!  That day the oncologist put me back on 4 mgs and by the next day I was switched to 8 mgs.   I keep reminding myself that I have seen the scan myself –   Last night I had such nerve headaches from the eye to my tooth (this is how it started) . I want this appointment coming up to be over but my husband calmed me down this morning that they have to wait to see if the dex does bring the swelling down.  THis afternoon I didn't do as much with my eyes and right now there is no headache.  I'm trying to avoid calling them to be put on any higher amount!!!!  

I go on the 18th to talk to the team to decide what they will do next. Will the steroids do the job or will they release some of the pressure or a crainectomy.   I do still see the double at certain distances.  This is so scary.   I promise you that I would not have been able to take care of a child, in the attempting to get off of the steroids my husband has been taking care of me.

My point is that you might have developed edema because this can happen when the tumor (especially that was large) is now swelling.  

Remember that the endecort is not the same type of steroid.   If they have to put you onto dex, maybe they can reintroduce ippi immediately. 

So, this can be a normal side effect of some edema.  Oh yeah, my oncologist told me at this appointment that it can take up to 10 months to settle it all done!

Waiting is the hardest point.

Linda

Lisa,

You know that our timings have been very similar.  I was immediately put on steroids immediately because I already had edema when the tumor was discovered and was bleeding by the SRS.  I had an mri at 2 weeks after the SRS at EMR.  Boy, I thought that was a headache, no later I found out what headaches really were.   Had all sorts of problems and I blamed everything on the steroids.    

As soon as I was told that the tumor was shrinking they had me weaning (kept having headaches everytime they were lowering).  It was then about 2 months after the procedure.  I was thinking that I was having problems with the weaning.  Was down to the point where 2 weeks I would have been off. On Tuesday when we were leaving for my PET I started seeing doubles, scared to death, the good MRI had just been less then a month!  (my dates might be off some).  I went to walk into the hospital for the scan and couldn't even walk. A guard went and got a wheel chair.

We got ahold of my oncologist and they fit in an mri immediately.  The tumor has continued to shrink. It's edema – nucrosis of the tumor.  The area is huge!  That day the oncologist put me back on 4 mgs and by the next day I was switched to 8 mgs.   I keep reminding myself that I have seen the scan myself –   Last night I had such nerve headaches from the eye to my tooth (this is how it started) . I want this appointment coming up to be over but my husband calmed me down this morning that they have to wait to see if the dex does bring the swelling down.  THis afternoon I didn't do as much with my eyes and right now there is no headache.  I'm trying to avoid calling them to be put on any higher amount!!!!  

I go on the 18th to talk to the team to decide what they will do next. Will the steroids do the job or will they release some of the pressure or a crainectomy.   I do still see the double at certain distances.  This is so scary.   I promise you that I would not have been able to take care of a child, in the attempting to get off of the steroids my husband has been taking care of me.

My point is that you might have developed edema because this can happen when the tumor (especially that was large) is now swelling.  

Remember that the endecort is not the same type of steroid.   If they have to put you onto dex, maybe they can reintroduce ippi immediately. 

So, this can be a normal side effect of some edema.  Oh yeah, my oncologist told me at this appointment that it can take up to 10 months to settle it all done!

Waiting is the hardest point.

Linda

Lisa,

You know that our timings have been very similar.  I was immediately put on steroids immediately because I already had edema when the tumor was discovered and was bleeding by the SRS.  I had an mri at 2 weeks after the SRS at EMR.  Boy, I thought that was a headache, no later I found out what headaches really were.   Had all sorts of problems and I blamed everything on the steroids.    

As soon as I was told that the tumor was shrinking they had me weaning (kept having headaches everytime they were lowering).  It was then about 2 months after the procedure.  I was thinking that I was having problems with the weaning.  Was down to the point where 2 weeks I would have been off. On Tuesday when we were leaving for my PET I started seeing doubles, scared to death, the good MRI had just been less then a month!  (my dates might be off some).  I went to walk into the hospital for the scan and couldn't even walk. A guard went and got a wheel chair.

We got ahold of my oncologist and they fit in an mri immediately.  The tumor has continued to shrink. It's edema – nucrosis of the tumor.  The area is huge!  That day the oncologist put me back on 4 mgs and by the next day I was switched to 8 mgs.   I keep reminding myself that I have seen the scan myself –   Last night I had such nerve headaches from the eye to my tooth (this is how it started) . I want this appointment coming up to be over but my husband calmed me down this morning that they have to wait to see if the dex does bring the swelling down.  THis afternoon I didn't do as much with my eyes and right now there is no headache.  I'm trying to avoid calling them to be put on any higher amount!!!!  

I go on the 18th to talk to the team to decide what they will do next. Will the steroids do the job or will they release some of the pressure or a crainectomy.   I do still see the double at certain distances.  This is so scary.   I promise you that I would not have been able to take care of a child, in the attempting to get off of the steroids my husband has been taking care of me.

My point is that you might have developed edema because this can happen when the tumor (especially that was large) is now swelling.  

Remember that the endecort is not the same type of steroid.   If they have to put you onto dex, maybe they can reintroduce ippi immediately. 

So, this can be a normal side effect of some edema.  Oh yeah, my oncologist told me at this appointment that it can take up to 10 months to settle it all done!

Waiting is the hardest point.

Linda