Hello everyone,
My husband is very sensitive to heavy drugs. I mean he hates how they make him feel and can't tolerate them. He get's clammy, hot, sick to his stomach, his thoughts jump around, he can't sleep, etc....
He had major surgery in June (free-flap, jaw replaced with leg bone, skin graph) and has just completed radiation/chemo 3 weeks ago. He has taken Percocet for many months along with Advil and they are no longer helping. The Dr. tried a Fentenol (spelling?)patch on him the other day and after 1 1/2 days he tore it off. In the hospital he had a strong reaction to a drug they gave him after surgery which was a morphine type I believe. Is there another drug you could suggest or a way of administering it slowly we should ask about? He is almost in tears from the pain. I can't watch it and I hate my kids seeing him suffer so. We are seeing the Dr. tomorrow and he said he'd have another plan for him. He had wanted Kyle to just suffer through the first few days on the patch because side effects tend to settle down. He just couldn't do it.
Thanks for your input.
Sincerely,
Tamara (Kyle's wife)

Kyle - Tumor in tongue removed 3/07 - Chemo/rad followed. Tumor again in part tongue/base mouth/part of neck and around jaw - 6/08 - Chemo/rad followed. Age - 43 non smoker

As you can see I didn't have any surgery but I was given a ton of different pain meds and they all seem to produce worse side effects, as you have described, than the pain I was trying to overcome. One of my worst side effects was nausea which obviously creates a whole bunch of problems with the radiation and chemo. I eventually stopped all my pain meds and the nausea stopped and then everything else resolved itself and I was better off dealing with the pain than all the other problems.

Well you went through all the drugs I had ..... hopefully doctor will offer some alternatives. No one should suffer. Hope he can get some relief soon.

Donna

Tamara, My daughter also went through every pain med available and the only one that ended up working for her was Dilaudid. She started on Dilaudid pills (4 mg) and as her disease progressed she ended up with a Dilaudid IV pump. That with Ativan kept her fairly comfortable most of the time.
Just a suggestion.
Bonnie

Tamara,

My sister also started with the percocet, which took too long to kick in and didn't help much. She was also given dilaudid but that brought her blood pressure way down, she was allergic to it. A liquid type of morphine which is applied under the tongue and absorbed or swallowed worked well for her...and can be taken slowly if need be. It's not quite the same as the morphine shots given in the hospital...lasts much longer. Everyone's body reacts differently to pain meds. Hope Kyle will find something that relieves his pain and brings him comfort.

My best to you both,

Nancy
Nancy

Thank you for your replies. The Pain Specialist we saw Friday put him on Methadone and Neurontin beginning with low doses and working up. He is still taking Percocet as back-up. Last night he actually slept 3 hours in a row which he hasn't done in months. The Dr. is going to run some tests on him this week because there is a small lump in his cheek now. His pain is a mixture from the surgery, fluid pressure and now a possible new tumor. I see Kyle rubbing his face the same way he did when he had the tumor 6 months ago. I was hoping he'd at least get a break from this pain before anything returned.
I noticed some replies were from people who lost loved one's recently and I'm so sorry for your loss. It seems like such a hard thing to watch and I fear I might be heading in that direction. I do not know what to say to my husband this week if we are told it's back already. Thank you all for your suggestions. I may ask more questions shortly.
Sincerely,
Tamara (Kyle's wife)

Tamara,
There's all kinds of drugs out there for pain management and sometimes it takes a few days for the body chemistry to adjust to them. Morphine is one of the oldest and is a natural, fast acting opiate. Orally, it is in full effect within 30 minutes - faster than any other pain killer. Some persons do have bad reactions to morphine and/or other medications so you may have to experiment with different ones to find the most efficacious.

We should discuss the 2 basic types of pain management tools available to you:

1. Long term: These are for long term pain management, in other words, pain that will be constant for a month or more. They will often use a time release patch like Fentanyl. Morphine also comes in a time release patch. Fentanyl is the most powerful pain killer there is. It is a synthetic opiod and 100X more powerful than Heroin. Typically started in 25 mcg increments, they can go as high as 500 mcg. It is extremely important that you understand and follow all of the warnings, precautions and indications/limitations for use with this drug or ANY narcotic. It can be lethal if not used correctly. Many of us had this during Tx and had no problems with it. I doubt I could have endured the pain without it. I never went past 75mcg. Oxycontin and methadone, I believe are also used for long term pain management.

Short Term: Is pain that lasts for a short period of time or it could also refer to "breathrough pain" where the pain threshold exceeds that moderated by the long term drug. If there are too many daily "breakthrough" events they will adjust the long term pain killer to a higher dose.

So most persons will have both types in their pain management tool kit.

NEVER adjust any pain meds without clearance from your doctor - and that means either way. It can be just as deadly to suddenly quit taking opiate (or synthetic opiate) pain killers.

Always communicate the level of pain, using the pain scale of 0-10, 10 being unbearable. Pain should be managed to "3" or less and is a basic patient right. Demand it if you need it.

Special warning to patients with liver disease: Many synthetics, such as Vicodin or Percoset have high doses of acetomeniphen in them which is very toxic to the liver. You will need "natural pain meds such as morphine or codiene. Fentanyl has no acetomeniphen in it either.

Always talk to your pharmacist when getting pain meds.

In my experience the MO was the most qualified person to manage my medications.

Constipation is a very serious side effect of narcotics and there are countermeasures that you can get from the nutritionist.

It is especially important to stay hydrated.

If you are putting meds down a peg tube, particularly crushed tablets, always clear it first with your doctor or pharmacist. Crushing a time release tablet can have serious consequences.