Decadron Problems!!!!

I have been taking care of my mom diagnosed with GBM IV on 7/07.  She has had surgery, radiation, and chemo.  On her first MRI in 10/07 the was a recurrence.  Each MRI has shown progression from the initial 100% resection.  The Gamma Knife has seemed to help the most with the progression, it actually stopped or slowed regrowth.  The Gamma Knife was done in 01/08 and since then she has been on Decadron.  I have read as much as I can asd spoke to all the Doctors and seem to get the same answer about Decadron.  Right now she has lost her short term memory and does not know the day, date, or year.  Yesterday I took her to the hospital because she said she was having chest pains.  I first was thinking that this could be from the Avastian.  She has has 3 cycles.  We go to the hospital and they cant find anything wrong with her except for the tumor.  In the last week she has declined more than in the last 9 months.  When I got her home from the hospital she was sitting up and furiously rocking back and forth, jitterning, paranoid, and just plain uncomfortable.  The Doc's are telling me that it is Steroidal Psychosis.

I apologize for the crudeness in my post but I have not slept in 2 days.  Is there anyone who has has a negative side affect to Decadron? 

It amazes me that through the Radiation, Chemo, Avastian, Pain Meds, and the Thirty other Meds that Decadron would seemingly have the worst reaction too. 

Ranting, Raving, Upset, Hurt, Crying, Confused, Sick, Sleepness, and Unknowing,

Dan

Dear Dan,

I am on Decadron(dexamethasone) however my dose may not be what your mom is on.  I take Decadron once a week and the day I take it I feel jittery and anxious.  I also don't sleep for two days following it.  I use an antianxiety medication called xanax to help me sleep for those two days.  It helps.  There is also another medication you can ask about called ativan.  It will help her relax and feel more in control.  Your mom should not have to suffer these side effects without some relief.  I am a nurse and have seen these medications used successfully on patients and this is how I knew to ask about them when I began the Decadron.  Good luck and don't be afraid to ask your mom's physicians for something to help her. If they don't see this agitation as a problem then I would find other oncologists.  This is a quality of life issue and your mom deserves to have the best quality of life she can have.

Cindy

Dan,

I have lived the same situation with my wife. Where exactly the tumor was located and to where it is spreading right now?

What is your mother daily dose of Decadron?

Physicians are not wrong in think about drug induced psychosis. However tumor location could set this kind of reaction as well.

Cindy D makes an extreme important point when she cited quality of life and the way your physician treat these reactions. Despite being expected it should not be left unattended. There are plenty of drugs that could be used to ease this extreme anxiety, and provide your mother some quality rest. Discuss with her doctor the possibility to use some of the options presented. I talked about this issue with Diane (from brainhospice.com) and she told me that the majority of cases are treated successfully with Haldol.

In my case specifically it took a huge effort to catch up a consistent set of drugs that actually helped. Some doses that should be efficient for any one of us, did not scratched the surface when it comes to brain injury. It is important to be very well assisted by your neurologist in this process, so you can safely change or increase doses. Most of these drugs had what countless interactions and only a good physician can handle this correctly.

Please fell comfortable to ask anything you want. During these days I felt terrible, because no one else seems to have the same problem. I usually heard from people being more and more detached from reality without the outbursts of fury, and bizarre manias I became used to watch at home. After a while a lot of similar stories started to pop up.

On 4/24/2008 Fightingback wrote:

I have been taking care of my mom diagnosed with GBM IV on 7/07.  She has had surgery, radiation, and chemo.  On her first MRI in 10/07 the was a recurrence.  Each MRI has shown progression from the initial 100% resection.  The Gamma Knife has seemed to help the most with the progression, it actually stopped or slowed regrowth.  The Gamma Knife was done in 01/08 and since then she has been on Decadron.  I have read as much as I can asd spoke to all the Doctors and seem to get the same answer about Decadron.  Right now she has lost her short term memory and does not know the day, date, or year.  Yesterday I took her to the hospital because she said she was having chest pains.  I first was thinking that this could be from the Avastian.  She has has 3 cycles.  We go to the hospital and they cant find anything wrong with her except for the tumor.  In the last week she has declined more than in the last 9 months.  When I got her home from the hospital she was sitting up and furiously rocking back and forth, jitterning, paranoid, and just plain uncomfortable.  The Doc's are telling me that it is Steroidal Psychosis.

I apologize for the crudeness in my post but I have not slept in 2 days.  Is there anyone who has has a negative side affect to Decadron? 

It amazes me that through the Radiation, Chemo, Avastian, Pain Meds, and the Thirty other Meds that Decadron would seemingly have the worst reaction too. 

Ranting, Raving, Upset, Hurt, Crying, Confused, Sick, Sleepness, and Unknowing,

 

Dan

Hi Dan:

I myself a caregiver for my mom who was diagnosed with GBM IV on 3/28/08.  I was just about to post with this concern and came across this.

She was diagnosed 6yrs ago with manic depression (after the death of her mother). She would sometimes go into rages out of anger, but since she left the hospital (3 weeks ago) she has been in a rage for 3 days.  She gets uptight when she is told what to do because of her memory etc...  Yesterday 4/23/08 she went to her radiation appt and flipped out because my aunt had to show her where the restrooms were (because she is losing her sight).  She swears she can take care of herself, then will walk right into a wall!!!  The Dr. asked how much steroids she's taking.  She's was taking 2mg every 8hrs, they reduced it to every 12hr instead.  So we will see how this works.  She gets very belligerant and seems to be extremely angry.  I notice if she's in pain it's even worse.

Dan, you are not alone.  I haven't slept in 3 days and my husband is my look out for her when I do sleep because she will try to cook in the middle of the night. She doesn't sleep at all at night which is another side effect of this drug.

This is my experience with the steroids and I'm lost for options at this point. 

Take Care

Kim

On 4/24/2008 Fightingback wrote:

I have been taking care of my mom diagnosed with GBM IV on 7/07.  She has had surgery, radiation, and chemo.  On her first MRI in 10/07 the was a recurrence.  Each MRI has shown progression from the initial 100% resection.  The Gamma Knife has seemed to help the most with the progression, it actually stopped or slowed regrowth.  The Gamma Knife was done in 01/08 and since then she has been on Decadron.  I have read as much as I can asd spoke to all the Doctors and seem to get the same answer about Decadron.  Right now she has lost her short term memory and does not know the day, date, or year.  Yesterday I took her to the hospital because she said she was having chest pains.  I first was thinking that this could be from the Avastian.  She has has 3 cycles.  We go to the hospital and they cant find anything wrong with her except for the tumor.  In the last week she has declined more than in the last 9 months.  When I got her home from the hospital she was sitting up and furiously rocking back and forth, jitterning, paranoid, and just plain uncomfortable.  The Doc's are telling me that it is Steroidal Psychosis.

I apologize for the crudeness in my post but I have not slept in 2 days.  Is there anyone who has has a negative side affect to Decadron? 

It amazes me that through the Radiation, Chemo, Avastian, Pain Meds, and the Thirty other Meds that Decadron would seemingly have the worst reaction too. 

Ranting, Raving, Upset, Hurt, Crying, Confused, Sick, Sleepness, and Unknowing,

 

Dan

Dan,

 I am sorry to hear what you are going through and can totally relate, as I went/am going through the same thing with my father.  He has had GBM for 5 years with many ups and downs.  To make a long story short, he was on Avastin and CPT-11 with stable MRIs and then suddenly started to deteroriate after Christmas.  By mid-Feb he could barely walk and was in a wheelchair, confused, etc.  We went back to Duke with a new MRI in hand and it turns out he has severe brain damage from the Avastin... looked like he had many strokes in the brain and it was very swollen.  We tried increasing the Decadron, but it did nothing.  He had zero quality of life and they told us 3-6 months and we enrolled him in Hospice.  He decided to stop all steroids last week and is really declining-we don't expect him to live much longer.  It is truly a nightmare and is horrible to see you beloved family member like this.  The point of this story is to perhaps see what a new MRI shows.  We expected the tumor to have expanded based on his status, but it was brain damage from the Avastin.

I wanted to apologize for not getting back to everyone the last couple of days have been bad.  Today I had to bring my mom back to the hospital.  She is very weak and fragile now and the doctors say she might have pneumonia.  We were just there a couple of days ago and I asked about that, but her blood work all came back fine.  Today has been the scariest day so far for me.  When we left the house like so many other times to go to the hospital something about today feels different.  I don't know what it is, but something. 

I believe that she is in the hands to care for her and that they will do everything for her, but I have to keep asking myself this question why wasn't this found sooner? The same symptoms have been going on for weeks.  She has seen countless doctors for this and NO help.  Today when we got in to the ER ( I knew the doctor ) he looks at me and says " Shes staying either here or at Rhode Island Hospital " Just last Wednesday a different doctor said she was okay with the same symptoms.  This does not make sense to me.  Even when her Oncologist saw her last Tuesday she said that the blood work was fine and chest xray where ok. 

It seems to me that doctors of any speciality look in a linear line and not out of the box.  Even now when I brought her in to the hospital I asked the doctor why her blood work did not show anything? His response was sometime that can happen with patients.  My thought to him was could it be due to all the immune suppressant drug? Then the Decadron causing a false White Count?  The answer he gave me was YES.  Then why didn't the doctor that saw her 4 days ago look in to that and start treatment?

Thank you everyone for listening to rant.

Scared, lonely

Dan