Decrodon

Since starting in home hospice care my dad was removed from all medications. The decrodon was ceased Monday because of severe mood swings, anger and confusion. My dad is now unable to walk and has very little strength left. I know this is a side effect of coming off the steroid. I am curious as to why the doctor didn't wean him off. We are asking hospice nurse to start decrodon again because he is so much worse when not taking it.  Once he starts the decrodon will he regain his strength? His speech got worse when off and he started saying things we couldn't understand. I know this is all normal when steroids are stopped.

  He doesn't have much time left but we would rather deal with the mood swings than watch him be miserable and unable to move.

Kristi

Daughter of Paul diagnosed with GBM stage 4 Jan/09

Kristi,

Besides the fact that it's not even safe to cease dex cold turkey, I think you said it all. You would rather deal with the mood swings than have him in discomfort and unable to speak. This is YOUR call to make, you and your family. I have heard that the steroid prolongs his life only a little, but heavens why hold back on anything that makes him more comfortable or able to enjoy and communicate with his family in the last few weeks or whatever. : ( I am so sorry that he has gotten to this point.

Love and peace,

Sarah

mom of Andy 27 dx gbm/pnet 1/09

Remember your dear dad has brain disfunction but the decadron causes those symptoms also. I am shocked the doc did not wean him off.... Take care and do the best you can. MMS

On 9/4/2009 FitMommy09 wrote:

Since starting in home hospice care my dad was removed from all medications. The decrodon was ceased Monday because of severe mood swings, anger and confusion. My dad is now unable to walk and has very little strength left. I know this is a side effect of coming off the steroid. I am curious as to why the doctor didn't wean him off. We are asking hospice nurse to start decrodon again because he is so much worse when not taking it.  Once he starts the decrodon will he regain his strength? His speech got worse when off and he started saying things we couldn't understand. I know this is all normal when steroids are stopped.

  He doesn't have much time left but we would rather deal with the mood swings than watch him be miserable and unable to move.

 

Kristi

Daughter of Paul diagnosed with GBM stage 4 Jan/09

On 9/4/2009 mmsurvivor wrote:

Remember your dear dad has brain disfunction but the decadron causes those symptoms also. I am shocked the doc did not wean him off.... Take care and do the best you can. MMS

On 9/4/2009 FitMommy09 wrote:

Since starting in home hospice care my dad was removed from all medications. The decrodon was ceased Monday because of severe mood swings, anger and confusion. My dad is now unable to walk and has very little strength left. I know this is a side effect of coming off the steroid. I am curious as to why the doctor didn't wean him off. We are asking hospice nurse to start decrodon again because he is so much worse when not taking it.  Once he starts the decrodon will he regain his strength? His speech got worse when off and he started saying things we couldn't understand. I know this is all normal when steroids are stopped.

  He doesn't have much time left but we would rather deal with the mood swings than watch him be miserable and unable to move.

 

Kristi

Daughter of Paul diagnosed with GBM stage 4 Jan/09

 

You didn't mention the amount of decodran your father was taking. Your oncologist or primary care provider in my opinion are guilty of malpractice and patient abuse if they did not offer a taper or some sort of alternative. I'm a retired registered nurse, did not work in this field but taking someone off a medicine of this nature cold turkey is not acceptable. I hope for your fathers sake hospice is proactive and gets things squared away for you and yours. This looks like the typical situation where the health care providers are frustrated with their inablilty to help your father and unable to deal with you. Good Luck.

He was only on 2mg 3x per day. Very low dose right? I would like him to be comfortable and the brain hospice site reports people taking very high doses up until the end. Hospice was surprised he wasn't taking any steroids. He will be starting up again as soon as they contact the doctor.

My dad was on 16 and now on 18 mg a day and the only side effect seems to be swollen feet.  He is quick to anger and went into rages but then again, that is what he use to do when he was much younger.  So we talked to him that it cannot healthy and although he still gets upset, who would not with the frustration of one day being able to walk 18 holes of golf at age 69.5 and what seems to be the next, not being able to pick up a cup, he is doing so in a much more controlled manner.   

As with this disease each person is completely different.  

 Our NO is suggesting 18 is the max because they are worried about his stomach but given he is now 70.5 and realistically given the location of the tumor, we would be willing to exchange function and quality of life for time.