Drug dependencies / withdrawals (Dilaudid - devils drug)

A warning to all who would listen - stay away from dilaudid.  It is a smooth ride with a deadly kick.  My wife of 17 years was diagnosed with a 5cm tumor (Gliosarcoma - right temporal) in February 09.  Successful retraction with minimal tumor remaining.   Went through first 45 day course of daily temodar/radiation treatments with flying colors.  Next was Irenotecan and Avastin which she is still on.  Began to develop ghost pains in her legs and headaches.  Started trying a long line of meds to try to get relief.  Everything under the sun.  Oncologist turned her on to Dilaudid 4 months ago.  She has taken it religiously at night (8 mg) to allow her to sleep through the pain.  Periodically took a few mg during day for headache.  She gradually began to sink into a fog, little short term memory, couldn't walk by herself, sleeping all the time, basically bed ridden.  Thought the cancer was starting to worsen.

Developed severe nausea out of the blue.  While trying different meds to tackle the nausea we stopped Dilaudid and started another opioid.  That demon Dilaudid bit back but we didn't know it was her.  Had several stroke-like events, terrible shakes, stiff neck/legs, unable to verbalize (thick tounge).  After 911 call she had 2mg of Dilaudid in the ER to help her sleep.  Presto, quiet as a baby...

Oncologist took over and began instant detox of all pain meds with plans to start physical therapy next week.  In the midst of the detox now, wouldn't recommend this to anyone.  If you've ever seen a junkie coming down cold turkey off of heroine you know our pain.  Wants it, needs it, has to have it, and I'm the one standing square in the way.  Nothing will tear your heart out more than the look in your loved ones eyes like you have betrayed them, you are hurting them, you won't help them.  Thank God for our faith.  Packing up tomorrow morning to take her home to finish detox there.  Sitting up tonight in the hospital trying to tell her nurse when to give her what to try to keep her asleep all night.  .5mg Dilaudid now, Adavan in 3 hours, another .5mg Dilaudid 3 hours later.  That only takes us until 4:00 AM... pray it lasts until morning...  I have cherrished being caregiver to my wife through this whole ordeal - until now.  I dread the morning...

I am sorry about what you're going through, you and your poor wife, and I'm also sorry to say that I know what it's like from the caregiver perspective. My son had no relief from morphine and was on Dilaudid, a LOT, for a few weeks. He even wrote the word on his arm like a big black tattoo because he couldn't remember the word and how to say it but was OBSESSED with getting more of it. He hassled every nurse and made them think his pain was worse than it really was. We weaned him off it with Fentanyl... and then had to taper off of that months later... but at least it wasn't such a roller coaster ride like the Dilaudid. Fentanyl patch delivered a steady trickle into the bloodstream. Maybe your wife could use this in a transitional way. It's all awful but we found the patch was the best... we could point to it and say, IT IS WORKING, DUDE... EVERY MINUTE! He took comfort in that when he was obsessed and understandably terrified of going back to the pre-op and post-op nightmare pain. 

Now I'm contending with Oxycodone. He wants to take it to just to feel the buzz. I want to save it for a day that it might be actually NEEDED here. We're going to have to have a talk and I've been avoiding it. Thanks for sharing your situation... I've got mine and I've been trying to rationalize it or see it in perspective, like what's a minor drug addiction for a young man facing his own demise... but I need to help him enjoy the time he has left in more positive and AWAKE ways.

Keep in touch and good luck. Sleep as well as you can, so you can face the next day, right? That's the best we can do.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

FLGator and Sarah,

How awful that you both have to deal with drug dependencies in addition to brain tumors in your loved ones.  Nothing is easy for us as caregivers, is it?  I am sorry that I have nothing to offer to help, but I wanted you both to know that I support the hard work you are doing with love.  Sometimes for me, there seems to be no end in sight, but when I feel discouraged like that, I ask the Lord to give me patience for just one more day.  I also pray for strength to be kind and compassionate to my patient and continued painfree life for my loved one.

May we all, caregivers and patients, have some peace today.

Joan L

Sarah,

Totally understand the Fentanyl patch, my wife was on that at the same time she was taking the Dilaudid.  I really don't know what our Oncologist was thinking.  She was on the regiment for 6 weeks before a friend told us some horror stories about it.  We took off the patch and have not put another one.

To follow up on my original story - The dilaudid, atavan dance went well until 4:00 AM when she woke up with nothing to take until 7:00 AM.  Those were some tough 3 hours.  Ya know, as caregivers there are just some things that you just shouldn't see.  Like my wife begging for a pillow that she can scream into which she did off and on for 3 hours.  Knowing the doctor was going to be in at 8:00 I had to hold my wife off until then because I wanted the doctor to see her as she was - not doped up and sleeping.

When the doctor finally showed up (9:00) my wife was fully wound up.  After a few questions the doctor delivered the blow by telling my wife that her mom and I (her support team) were no longer going to be able to stay with her 24x7 and that he was cutting out her drugs.  She responded to that by saying that she would get out of the hospital "one way or another".  She said outright that she would hurt herself which was met with immediate action by the doctor.  He committed her and took over.  Many prayers had been raised leading up to that point and I have to say that was definately God's answer.  He knew there was no way I could detox her and help her with the chemical and emotional needs she had.

So she is now in the hospital for a undetermined time.  At the end of the day this has the potential to be the best thing that has happened.  Could it be possible that I can get my wife back at least at some level...  That is yet to be seen.  Right now I just pray the doctors handle this situation right and we can put the pieces back together for her.

My wife's MRI's have been stable for the past few months.  What a waste it would have been to have brain cancer but to have ended up dying from being over-medicated.

God bless you,

Steve