My twin brother was diagnosed with Stage III Esophageal cancer last 10/30/09....right out of the blue....no symptoms. Since then he has had 206 (2x103) hours of continuous chemo infusion (5FU/Cisplatin) and 28 radiations over a 5.5 week period, followed by a total esophagectomy at Mayo on 2/24/10. From a cancer standpoint, the surgery was successful. Esophagectomy is one of the most major surgeries done at Mayo with much pain and recovery time needed to approximate even a somewhat normal life
Here is where the Dilaudid journey began....post surgery. We got home on 3/8 and since then he has been in the hospital for 26 days.....each time needing IV dilaudid to quell the pain beast from having no stomach per se, and training his intestines to process food. He had a J-tube for 6 weeks (nothing oral). We are well aware of the dumping/nausea connected to this radical surgery. We went back to Mayo a few weeks ago for a follow up and/or other ideas about the 'vise like' cramping he experiences. In order to get there, he was put on a pain pump through a PICC line. (he's had 8 PICCs since this all started---failed arm veins/chemo destroyed veins....etc.) His pump dose was set at 2mg /hr because it would take 2....sometimes 4 in the ER to get management if we had a white knuckle pain ride to the ER....1/2 hr away. He has been taking about 5-7 shots a day (10-14mg) for the last two weeks in addition to whatever he got post surgery at Mayo and 26 days (over 3 different times) in hospital since 3/8/10
Somewhere along the line we may have crossed the barrier of surgery issues and dependency. We had been wary of this right along, but now the nausea and severe cramping is accompanied by some of the classic Big D withdrawal symptoms....chills/restless/can't wait for the next shot sort of thing. We did cut the dose on the pump back to 1.5 two days ago, but every 45 minutes. This would be the same total dose over a day (which we have never done), but less of a dose. 2mg was the minimum required before. Last night on this new protocol is when he came to the conclusion that the Dilaudid is very possibly now the problem and not the solution.
We have read that Xanax and Ativan help with withdrawal. That seems so with the Ativan as taking it at night (one .5mg) allows more time between shots when sleeping. His Xanax scrip is out right now. We mentioned Suboxin to the pain guy the other day, but he was of the opinion to cut the dose/frequency back (as we had planned to do before seeing him)......using Suboxin or something similar for later.
We are seeking ANY advice / experiences those here may want to share with us. Could more Ativan during the day help? He did another .5mg Ativan earlier today and has been able to hold off the button going on 4 hours now albeit with some discomfort. Something really has a grip on him and life is not good right now. We also can't be sure that there aren't some surgery complications at play here either.
This has been 7 months of hell so far and while we are well aware of the seriousness of esophageal cancer....we just want to get through this part so he can have a more normal life
Thanks for reading this long post. I thought it necessary to supply some history. I'm hoping I picked the correct forum.
There is also the point that he might still need some form of strong pain releif, after what he has been through, Advil may still not be enough to keep him comfortable
Thanks..... we are cutting the 'jolt' down slowly by re-programming the pump weekly.
....and yes, there is still the unknown that he still needs this narcotic to battle legitimate pain. It would almost be a good thing if it is a dependency because we believe he can lick that. If it is not....then continued healing from this drastic surgery will continue to wreak havoc with his daily life.
If he is still healing, it might be worth looking into supplements of zinc and vitamin c - they seem to speed healing quite significantly - provided his doctor approves
IV Dilaudid is about as potent as narcotics come, so at some point it might be worth discussing with his doctor transitioning to an oral medication for a variety of reasons.
If he does need narcotics long term for pain, it isnt a huge drama, yes, he will probably be dependant on them, but not as dependant as diabetics are on their insulin - try to support him and dont make him feel guilty if this is the case.
I'm very sorry for your pain. Sounds like you've been through one heck of an ordeal, with more to come, unfortunately. From what you've posted, it seems that maybe good PM is going to be a staple in his life for quite some time. This should be embraced and not fought. Good PM care is essential in situations like this and given that he still has a lot of pain, it's imperative that people not get fixated on the negatives of taking narcotics. Many people spend the rest of their lives on pain meds and are very productive despite the fact. His WD symptoms are very normal as at some point in PM care, "physical dependence" sets in. It's very important to note that this is much different than "addiction", which is the psychological pleasure of taking drugs. For example, the morning coffee drinker can attest to iif they stop coffee cold turkey.
The WDs in between doses is what we call in PM the "ups and downs" ,or the rising and then lowering of one's BPL (Blood Plasma Level). When one's BPL, or the amt of the drug that is in one's system, falls below a certain point, the mini WDs set in. When BPL bottoms out, then full WD begins. Depending on how long one has been taking meds and how powerful they are, determines how much med (BPL) one needs to sustain pain fighting ability and keep one out of WD.
The shots are a very short acting PM regimen. With each shot, his BPL spikes and then quickly subsides. If you were to graph it, think of it as a number 7 on it's side. The BPL spikes, or goes straight up, and then recedes on about a 45 degree angle. It appears as what he needs is some type of LA pain med to stabilize his BPL and then some type of SA med whenever he gets the spikes in pain, or what many call "flare ups." The official term in PM is called "Breakthrough pain."
Has your Doc mentioned any other pain med options beside the pump? If the pump is delivering regular intervals of med, he shouldn't be in any type of WD.
To be very honest with you, I wouldn't focus on, or really even concern myself with trying to ween him down due to WDs or because of any negative connotations associated with taking narcotics. The exception would be of course unless he no longer needs the pain meds, or needs much less. I suspect, however, that he needs the pain meds for quality of life and weening him before his pain is cooperating is only going to add to his suffering. Additionally, pain to the body is a major stressor....About as big as one can get. Thus, his BP, heart rate & etc., may all be significantly higher than normal. The more pain one has, the more stress on the body. Unfortunately, this also slows the healing process. The ativan and other depressant type meds would help this part of the WD, but will have a minimal effect. The only way to keep him out of WD is to give him more med. Reducing his med by 5-8%, on a very slow interval would keep him out of WD. Anything greater than that amt, would produce some form of WD.
If it were me, I would have a sit down with his PM Doc, or whoever is managing his pain, and make sure that you come up with a plan to compassionately manage his pain. First and foremost, the goal should be to ensure he's comfortable and not suffering more than what's necessary. It may very well be a situation where he's on major pain meds the rest of his life. For example, I know several people who have pain pumps permanently installed and there are even posters here who have them. It's amazing what something like this can really do for someone. Within this pain mgt program you set up, a factor of it should be to include the minimization of these WD symptoms & etc. He should not be made to suffer. Candidly, when one is in this type of situation, the absolute last thing that should be on anyone's mind is the negative connotations of taking narcotics. They exist for a reason, and it appears as he needs them as much as anyone.
Best of luck to you and please let me know if I can help.
My brother has pretty well laid it out. The kicker is we don't know for sure if the abdominal pain and the pain I can get on the right hand side of my back are surgically related, Dilaudid related, or both. There are times when I'll push the button on the pump and the tightness (like a vise being tightened on my abdomen and lower right hand back) will get worse after the jolt (1.5mg) of Dilaudid. Sometimes eating will bring on that tightness. Caught between a rock and a hard place. Ativan seems to help me be able to sleep. I went two days without sleep till last night. (I was trying Ambien those two nights----didn't work for squat) I finally slept last night which in turn made it about 12 hrs before I had any Dilaudid. Can't feel pain if your asleep. I did 8 Pain pump injections yesterday or 12mg for the day. (I had the dosage reduced from 2mg per hr to 1.5mg every 45 minutes should I desire or have a need.)
It's a matter of wanting to get off this stuff, but not really knowing if the Dilaudid is the source of the pain I feel. I have a PICC Line in my right arm. I've had 9 PICC Lines since the cancer diagnosis- Lots of fun. The last 6 months have been straight from hell given the heavy duty chemo/radiation/surgery. Dilaudid is the drug of choice these days. IV Dilaudid is the only thing that works. The pills do nothing except space me out, hence the pump and PICC Line. I took a jolt about 2 hrs ago when I got up. The tightness is not as bad as last night. At that point, I have to wonder if NOT doing any Dilaudid for 12 hrs allowed for some relaxation of my abdomen/back.
I will say the tightness and numbing pain follow my surgical scars. I have hundreds of stitches internally and externally They cut you up pretty well when the Ivor Lewis Technique is used for the esophagectomy.
I'm planning on waiting to do another jolt. There's a school of thought that says you should maintain frequency while cutting down the strength of the dose. Any thoughts?
Also: I got my doctor to prescribe me a Clonidine patch which I really don't notice any difference, but maybe it might be worse without.
I'm just throwing some random thoughts out there as to my situation and once again, thank you to those that have taken the time to respond.
Last edited by wireboltman; 06-05-2010 at 07:29 AM.
Well....we weaned down to about 5mg per day.... up until 7/2/10 ...through the pain pump.....tried to pull it off and did not succeed. Went into in house detox for 7 days until this past Wednesday. Had some bad days in there, particularly last Saturday. Because of the recent esophagectomy concerns, he had CT done for potential blockage and a camera put down his new 'stomach tube'....These proved negative for any issues.
He did have 1/2 qt of fluid in his right lung which was subsequently drained and proved negative for any issues.
This past Mon/Tues went OK and they released him Wednesday AM. No sooner did we get home than intense nausea overcame him which he has very little relief from. He is still taking 16mgx4 zofran and 8mgx3 of Neurontin. Because he can't eat much and fluids aren't staying down, we risk an ER visit. His PICC was pulled early Wed. thinking we were headed upward and onward.
This is day 9.5. He is still exhibiting WD symptoms...nausea/hot/cold/chills sometimes...some cramping. The intense viselike pain noted above is gone, but the thinking is there may be an underlying esophagectomy issue although there is no physical reason for one
Can Dilaudid WD last longer than 7-10 days? We are in a painful /nauseous limbo right now
Have you tried Klonopin? It can be used to ease the symptoms of withdrawal. It is not as strong as Ativan. Very helpful for sleep and relaxing tense muscles. Ask your doc if your interested in trying it. Also, in my humble opinion, I would not be stressing so much about addiction at this point. Or, maybe I'm not understanding everything in your post. Priority number one is clearing yourself of cancer and two, making sure there is no problem in the esophagus. And of course pain management. Just my 2 cents....janiee P.S. I think jonstar's idea of the Fentanyl Patch is a good one.
Last edited by janiee08; 07-23-2010 at 11:19 PM.
Reason: forgot something