Should me sister wait for surgery!!!

Hello everyone,

My sister is scheduled for her second craniotomy on Tuesday. Her NO is on vaca. It`s for recurrent GBM and she was dx on 7/28/09. Here`s the question...unrelenting headache last night so no sleep she also seems very removed from what`s going on around her. detached almost. She has gone from walking ,working etc two days ago and now has the terrible headache pain. They cut her decadron down to almost nothing and we are wondering if that could be the cause of her headache.

Of course we are freaking because her tumor has come back just 8 weeks after initial dx. We also thought it a bit strange that surgery wasn`t scheduled immediatly if the tumor is growing so quickly.

Any thoughts would be greatly appreciated :)

Thanks, Marilyn`s sisters

Up the decadron.  The lowering of the decadron could cause these symptoms if it was done too fast or just some people cannot get lower than a certain point.  If you cannot reach the NO, or any other doctor who can help just double her current decadron dosage and see if it helps.

If she is totally off decadron then give her 5 mg.  I am not a doctor but something should be done or she can die before her surgery. (Not trying to scare you or anything.)

Or take her to an emergency room.  These are serious symptoms. Do you have any Vicatin or other strong pain meds?  If these are not working get her to an emergency room.

Take care,

Peace,

JMB

Don't be afraid to speak up for your sister and don't let her have a surgery that you and your family members are unsure of. 

Definitely ask for the decadron to be increased!!!

Ask for a second oppinion if you are unsure!

Peggy 

On 10/21/2009 gbmwife wrote:

Up the decadron.  The lowering of the decadron could cause these symptoms if it was done too fast or just some people cannot get lower than a certain point.  If you cannot reach the NO, or any other doctor who can help just double her current decadron dosage and see if it helps.

If she is totally off decadron then give her 5 mg.  I am not a doctor but something should be done or she can die before her surgery. (Not trying to scare you or anything.)

Or take her to an emergency room.  These are serious symptoms. Do you have any Vicatin or other strong pain meds?  If these are not working get her to an emergency room.

Take care,

Peace,

JMB

I had a feeling that it might be the smaller dose of decadron just from all of the posts that I have read.  She is better this evening but is still non reactive and really sleepy.

Her surgery is on Tues the 27th so hopefully things won`t go downhill until then.  I will push for a higher dose of decadron and see what happens. We have seen this disease turn on a dime and thus the "extreme" reaction .

Thanks for your input, I can`t tell you how much it helps :)

I wish we'd known about how much decadron a person NEEDS under certain circumstances. If she's drowsy, weak, in pain, nauseous, incoherent, psychotic, any three of the above, PLEASE give her more.

 When we finally got Andy to the ER (this happened three times, so I know whereof I speak) they gave him massive amounts and all times it brought him around and literally saved his life. It is dangerous to have the growth OR the edema putting so much pressure.

Don't wait for the doctor to say "OK". Or call the on-call docs and get the OK before you go to bed... no kidding. Tuesday is way too far away for this situation. When we brought Andy in the last time I think they gave him 24 mgs in a 'stat' dose, and then he took 8 mgs every 6 hours for the next week. So 5 or 10 or 12 in a dose is not too much, I promise.

Hugs and hope,

Sarah

mother of Andy 27 dx gbm/pnet 1/09

I agree with Sarah.  After dealing with this tumor believe me upping the decadron on your own is not crazy.  She also may be seizing some so do you have seizure meds. and/or ativan to calm her down.

Breathe and get ahold of someone tonight,

JMB

On 10/21/2009 heart and soul wrote:

I wish we'd known about how much decadron a person NEEDS under certain circumstances. If she's drowsy, weak, in pain, nauseous, incoherent, psychotic, any three of the above, PLEASE give her more.

 When we finally got Andy to the ER (this happened three times, so I know whereof I speak) they gave him massive amounts and all times it brought him around and literally saved his life. It is dangerous to have the growth OR the edema putting so much pressure.

Don't wait for the doctor to say "OK". Or call the on-call docs and get the OK before you go to bed... no kidding. Tuesday is way too far away for this situation. When we brought Andy in the last time I think they gave him 24 mgs in a 'stat' dose, and then he took 8 mgs every 6 hours for the next week. So 5 or 10 or 12 in a dose is not too much, I promise.

Hugs and hope,

Sarah

mother of Andy 27 dx gbm/pnet 1/09

Thank you Sarah!! You are a inspiration not only for Andy but I`m sure that you have affected many on this blog.

Unfortunately my sister and I don`t have a whole lot of input at this point. When we arrived at Marilyn`s this a.m. she was asleep. Her husband then told us about her night of agony. After no sleep and in horrible pain she had to go for a liver ultra sound. She was so ill that her husband had to put her in a wheelchair. She wasn`t even speaking at that point!!  You would think since they were at the hospital, he would pop into the ER or even her NO`s since both are right around the corner. Nope...he brought her home ,where she passed out so soundly that he checked on her every 1/2 hour to make sure that she was breathing.(sorry,a little dramatic).

We have read so much on this blog and others about how this cancer can turn on a dime. I actually don`t think you can be carefull enough about sudden downturns and subtle changes??

Anyway, thanks again. We appreciate your kindness and knowledge.

Marilyn`s sisters :)

Dear PF,

I 'get' bringing someone home. I have made that move myself... and other things like it. We just want everything to go back to normal. One time my father was bleeding very very badly (on Coumadin, to boot) and I didn't have the sense to call 911. Nope, very calmly took him in my own car to the doctor's office. INSANE! Our urge to 'normalize' everything is a coping mechanism but sometimes it's not our smartest urge. I hope if you talk with your brother-in-law in the morning you can stress that much more decadron could be just a safety move to get her to the surgery without serious damage over the weekend.

But good god almighty, these things can be runaway trains no matter what we do. If the worst happens, and she goes down fast, well, please forgive yourselves and your brother-in-law and everyone... there won't have been much anyone could have done to stop it. In that case (sorry... but I've learned to prepare myself for anything this year) please remember that the bad night came and went and she wasn't in pain after that. While this disease is hell, no doubt, at least the end isn't often physically agonizing. When our loved ones are gone, then we'll be shattered but we won't have to worry about their suffering any more. Whew. Let's keep breathing.

Love, Sarah

On 10/21/2009 heart and soul wrote:

Dear PF,

I 'get' bringing someone home. I have made that move myself... and other things like it. We just want everything to go back to normal. One time my father was bleeding very very badly (on Coumadin, to boot) and I didn't have the sense to call 911. Nope, very calmly took him in my own car to the doctor's office. INSANE! Our urge to 'normalize' everything is a coping mechanism but sometimes it's not our smartest urge. I hope if you talk with your brother-in-law in the morning you can stress that much more decadron could be just a safety move to get her to the surgery without serious damage over the weekend.

But good god almighty, these things can be runaway trains no matter what we do. If the worst happens, and she goes down fast, well, please forgive yourselves and your brother-in-law and everyone... there won't have been much anyone could have done to stop it. In that case (sorry... but I've learned to prepare myself for anything this year) please remember that the bad night came and went and she wasn't in pain after that. While this disease is hell, no doubt, at least the end isn't often physically agonizing. When our loved ones are gone, then we'll be shattered but we won't have to worry about their suffering any more. Whew. Let's keep breathing.

Love, Sarah

Truer words have not been spoken......I will not be talking  anything  over with my brother-in-law in the a.m.  I am spending the night at my sister`s because her husband decided to stay out all night. My other sister and I have powowed and taken a deep breath. We will talk with her (Marilyn) about the decadron and see what she thinks. I will also check in with her NO`s assistant about her dosage. We have been very carefull about stepping on toes but damn it this is my sister !!  We are about to be very proactive. I will not see her in pain when there is no need for it.

Thank you Sarah !  We will keep you posted :)

p.s. She mentioned several times today that there is a metalic taste in her mouth??  Tumor, medication or pre-seizure activity???

I had a metalic taste in my mouth when I became potassium, calcium and magnesium depleted.  Are her electrolytes OK?

Tom